Having a loved one diagnosed with a terminal illness, or being diagnosed yourself, is never easy and is something everyone will deal with differently. It can be challenging news to process and will likely bring on a range of emotions, including sadness, anger, and worry.
As all circumstances will be unique, it can be difficult to know what steps to take to ensure the best quality of life for you or your loved one – including how to organise care.
To help you navigate this journey, we’ll take a closer look at some of the care options available for the terminally ill, and offer advice on how to cope with the news of a terminal illness.
Coping with the news of a terminal illness
Hearing that you or someone you love has a terminal illness (a condition that’s incurable and likely to lead to death) can be very upsetting. You may experience a huge range of emotions, as well as concern about how your loved one is feeling, and perhaps anxiety over what comes next.
While it might be difficult to discuss, it’s important to try and open a conversation about the diagnosis. In the case of a loved one, it’s worth taking the time to learn how they feel, before sharing your views on the situation.
In doing so, no matter how tricky or painful, you’ll make sure that they feel heard and maintain a sense of control over their life. When considering care options, it’s ultimately about following their wishes, supporting them (and others close to them), and making sure they feel comfortable.
Our article, 7 things to consider when talking to a loved one about care, may be useful if you aren’t sure how to begin this conversation. Alternatively, if you’ve been diagnosed yourself, you can find advice on processing the news and further support on the NHS website.
Alongside support from family and friends, don’t be afraid to seek professional help, should you need it. Reaching out to your GP can be beneficial as they’ll be able to talk you through different support options available. Therapists and counsellors can also help you and your loved ones work through your feelings and provide an outlet during this emotionally challenging time.
3 types of care for the terminally ill
There are a few care options available for someone diagnosed with a terminal illness. While these all come under the umbrella term of palliative care, they differ slightly.
We’ll explore these below…
Palliative care
Palliative care (sometimes called supportive care) aims to provide terminally ill patients and their loved ones with the best quality of life possible. Rather than trying to cure the illness, palliative care focuses on making sure those affected feel supported and comfortable.
There are various branches of palliative care (including hospice care and end of life care, which we’ll cover below). But, broadly speaking, palliative care takes a holistic approach; addressing everything from physical pain to psychological, social, and spiritual needs.
By considering a patient’s whole being, palliative care aims to keep people active for as long as they can be. There’s an emphasis on doing what’s best for the patient, so palliative care is informed by the individual and their condition.
This means that there are no universal rules or structures to follow. For example, some people who’ve been diagnosed with a terminal illness may choose to go without care until they require day-to-day help, while others may prefer more immediate support.
Among other things, palliative care can include…
Physical care
Physical care is usually administered by healthcare professionals and involves anything from prescribing medication to checking dosages and helping with pain relief. It can also help people navigate any side effects of medication, such as constipation or nausea.
Some people may choose to stop treating their condition if they feel that the side effects outweigh the benefits. In this case, palliative care can be a way to help better manage symptoms and enjoy the final months of life.
Physical care may also include nutrition advice, tips for staying active, and other potentially beneficial ways to ease pain, such as massage.
How and where physical care is administered will differ from patient to patient. Some may choose to have a live-in carer to help with daily tasks and activities, while others may only need care at certain times of the day, in which case something like overnight care may be more appropriate.
For more information on the types of care available, you might find it useful to read our articles; 7 common types of care explained and Live in care vs hourly care – what are the benefits?
Psychological care
Being diagnosed with a terminal illness can be incredibly upsetting and difficult to process. According to Marie Curie, those living with a terminal illness are more likely to experience symptoms of anxiety or depression. Palliative care aims to help people deal with these emotions through approaches like talking therapies and meditation.
There’s also an emphasis on providing people with information about their condition, to help them feel more prepared and in the know. Psychological care can include talking through what’s happening physically, discussing available options, and making sure that the individual’s values align with any plans being made.
If you or a loved one are struggling with your mental health, you can find more information and advice on accessing support on the Marie Curie and NHS websites. Or, you may find it helpful to read our articles; 10 things you can do to help yourself through feelings of depression and 7 tips for coping with stress and anxiety.
Emotional care
Alongside psychological treatments like therapy, palliative care can provide emotional support. Those with a terminal illness can sometimes feel socially isolated and lonely, and palliative care can help with this by offering companionship.
Spiritual care
This can involve organising visits from a religious figure or spiritual advisor.
Sleep and fatigue support
Palliative care can include specialist support to help people improve their sleep quality and learn relaxation exercises.
For further advice on getting high-quality sleep, head over to the sleep and fatigue section of our website.
Financial and legal support
Palliative care can help you access support to assist you in understanding costs and processes, and advise you on any financial help that may be available.
You can also receive legal advice for help making decisions about living arrangements and next steps. For example, help with writing a will or setting up a Lasting Power of Attorney.
While talking about death isn’t easy, getting your own or a loved one’s affairs in order can help to provide peace of mind.
Hospice care
Hospice care aims to improve the life and wellbeing of those with an incurable illness, while prioritising a patient’s wishes and their sense of dignity. It begins at the point of diagnosis and continues until the end of life – including the bereavement period after a patient’s death.
Alongside helping to manage pain, hospice services may offer physiotherapy, occupational therapy, bereavement care, and spiritual and psychological support. While the services provided will differ between hospices, there’s always an emphasis on person-centered care. This means they’ll consider your specific circumstances to determine what’ll be most beneficial for you and your family.
Patients can receive hospice care at home, in a care home, or in a hospice. Typically, hospices have a more homely and calmer atmosphere than hospitals and, as family and friends are always welcome, they’re places of compassion and support.
While some patients may move into a hospice in the final weeks of life, others choose to move earlier to benefit from the extra help available. It’s common for people to go into a hospice for help managing pain and symptoms, before returning home again.
For example, at Marie Curie hospices, 50% of patients are discharged home. Patients may enter a hospice just for a day, for a couple of weeks, or more permanently. People may also enter a hospice for respite care – which gives loved ones or carers a break from their care duties.
We’ll discuss paying for care in more detail below, but hospice care is usually free for those with a terminal illness.
For further information on hospice care, head over to the NHS website. You can also use this search tool on Hospice UK to find your nearest hospice care provider.
End of life care
End of life care is a type of palliative care provided when someone is reaching the end of their life. Some people may go into a hospice to receive end of life care, while others stay at home.
While it can feel impossible to think about, planning for end of life care (often known as advance care planning) is usually a good idea. It involves having meaningful conversations with your loved one while they’re still capable of sharing their wishes about how they’d like to be cared for in the future. This will give your loved one a greater sense of involvement, a chance to lay out what’s important to them – and it can reassure you that you’re following their wishes too.
Following the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) can make this process easier. To learn what this is and how it works, head over to the Resuscitation Council UK website.
There’s more information about planning care in advance on the Marie Curie website. We also have a ‘What to do when I die’ organiser available on our website, which you might find useful.
What’s the difference between palliative care, hospice care, and end of life care?
While often grouped together, palliative care, hospice care, and end of life care are different.
Due to its holistic approach, palliative care is far broader and can be received for years by anyone diagnosed with a terminal medical condition and their loved ones. It focuses on improving overall quality of life.
Hospice care and end of life care are both forms of palliative care, but are more specific – usually offered to those believed to be in their last year, months, or weeks of life.
Who might benefit from palliative care?
Palliative care can benefit people of any age or at any stage of a serious illness. It can provide support to patients diagnosed with a terminal illness, their friends, and their family (for example, their children, partner, and/or parents).
Anyone in the final stages of a terminal illness will require palliative care to some degree, regardless of their age, condition, or location. However, this can mean different things to different people, and having conversations with your GP about what this looks like for you will be important. It’s also possible to receive palliative care while still being treated for a condition.
Palliative care can be provided in a range of different locations – for example, at home, in a care or nursing home, at an outpatient clinic, in a hospital, or in a hospice. It all depends on the individual’s needs and what’s available in their area.
Who provides palliative care?
There are a few main groups of professionals who provide palliative care. These include…
- General healthcare professionals (such as doctors and nurses) who provide day-to-day help for patients.
- Healthcare professionals who specialise in palliative care and palliative medicine. This may include occupational therapists, physiotherapists, and nutritionists.
- Non-healthcare professionals like social workers, financial advisors, and spiritual advisors.
To find palliative care services near you, you can use this NHS search tool. However, the first step will be to speak with your GP as they’ll be able to discuss available options with you in detail.
How much does palliative care cost?
Many forms of palliative care can be provided on the NHS if you meet certain criteria and your GP refers you. Your GP will refer you to specialist palliative care professionals who’ll carry out a needs assessment. This will determine how much and what type of care you or your loved one require and are entitled to.
Hospice care is usually free for patients as it’s paid for through a combination of NHS funding and public donations. This can be accessed through a referral from your GP.
The NHS can, in some cases, provide 24/7 nursing at home. There are also independent organisations that provide 24/7 nursing to patients with a terminal illness. You can learn more about NHS-funded nursing care and coping financially with end of life care on the NHS website.
If your loved one has been told they have 12 months or less to live, they may also be eligible for ‘special rules’, which means they’ll receive benefits at a higher rate and more quickly than usual.
However, if you’re not entitled to NHS-funded care, rates for carers vary depending on the type and the amount of care your loved one is receiving. And, some areas of palliative care may not be available on the NHS for free – in this case, you may have to pay.
If you’d like to find out more about care costs, the paying for care section of our website has plenty of information, including our article; I’ve been diagnosed with a terminal illness – what are my financial options?
Alternatively, Lottie is a free service which can help you find the best care homes and carers near you.
Final thoughts…
Learning that you or a loved one has been diagnosed with a terminal illness can be an incredibly sad and stressful time. It can also be tricky to understand the various care options available.
The most suitable type of care will depend on individual circumstances, so it’s best to speak to your doctor and consider what you or your loved one wants and needs. If you’d like further guidance, The Patients Association has a useful guide on planning for future care, which includes information on advanced decisions and the law.
It’s also important to reach out for professional support should you need it. There are plenty of organisations that can help, such as Marie Curie, Macmillan, and The National Council for Palliative Care.
For further reading, head over to the care section of our website. Here, you’ll find advice on everything from advice on choosing a care home to guidance and support for carers.
Have you had any experience caring for a terminally ill loved one? Do you have any other advice that you’d like to share? We’d be interested to hear from you in the comments below.