What is Palliative care and how much does it cost?

Written by Zenya Smith • 14/02/23

What is Palliative care?

There are many different dimensions to palliative care. It’s focused on providing support in each area. For this reason, people receiving this type of care will often receive support from several people and caregivers. During palliative care, it’s so important for the person to be cared for by compassionate people and professionals to offer emotional, physical, and practical support.

Aims of palliative care

The main aim of any sort of care at this stage is to maintain or enhance your loved one’s quality of life, ensuring they remain as well and active as they can, for as long as possible. A medical or palliative care nurse team will primarily support things such as medication and treatment, but a carer can provide support and companionship to assist.

The dimensions of care and type of care needed are often dictated by the individual condition or illness.

Live-in care can be a form of palliative care and provides social and companionship care for patients and their families. It can helps to keep people at home as they near the end of their life – as opposed to having to move to a hospital, residential home or hospice care home.

Types of palliative care

The type of care will vary a lot depending on specific circumstances – such as the type of condition and personal requirements. Different conditions will follow different trajectories, which are defined below.

Three palliative care trajectories

Rapid Decline – this is the type of trajectory usually followed when people have conditions such as cancer. These conditions will likely involve a longer period of steady progression before entering a clearly defined terminal phase. It’s at this point palliative care is usually put in place.

Intermittent Decline – people with respiratory conditions or heart failure usually follow a gradual trajectory of decline but with episodes of acute deterioration, followed by some recovery. This pattern may continue for some years, with the option of care available throughout.

Gradual Decline – gradual decline is usually experienced by the elderly and those living with conditions such as dementia. The period of decline can be much longer, and again end of life care could be implemented when the family feel it’s appropriate.

Palliative care exists on a spectrum – requiring input from a number of different people, support systems and healthcare professionals. The exact requirements can include physical, psychosocial and spiritual support.

Care services can be provided by healthcare and medical professionals, social care services, psychologists and spiritual figures.

Live-in care can provide social support for those who need palliative care – assisting with healthcare plans, providing personal care, running errands and providing companionship for friends and family. Live-in palliative carers can also provide various aspects of support for the other members of the wider care team.

When should palliative care be implemented?

Ultimately, the purpose of palliative care is to provide you with whatever support you need to enhance your quality of life – so when is really up to you. Your healthcare team and social workers will, of course, advise you on when they think it’s best to begin a palliative care plan, but wishes should always be central to the decision, as long as you have the capacity to decide.

If your condition isn’t immediately life-threatening, you may want to postpone care until a point where you need to change medications, or can no longer manage day-to-day without support.

If your condition can’t be cured or is an advanced illness, such as advanced cancer, you may decide to stop your current treatment altogether, particularly if you’ve reached a point where it’s invasive or comes with difficult side effects. Instead, you may choose palliative care to manage your symptoms and keep you well enough to enjoy the final months of life.

Or, you may wish to start your care plan straight away in order to access mental or spiritual support – as palliative care teams are made up of specialists that support the ‘whole’ you, not just your medical needs. This may be particularly comforting if you experience feelings of grief, anxiety, or depression after diagnosis, or want to explore certain religious beliefs.

End-of-life care

End-of-life care and palliative care are terms often used interchangeably, but they do have some differences.

This care involves support, medical care, social care and treatment for someone with a terminal illness and near the end of their life and is a vital aspect of palliative care.

In general, this type of care is provided for those who are believed to have a year or less left to live but, in some cases, someone will actually receive it for a very short period as timeframes are often difficult to predict.

If your loved one needs end-of-life care, you can be assured that the objective of palliative care services is to make them as comfortable as they can possibly be. The care will include everything from symptom control to offering emotional support and care for both your relative or friend and their loved ones.

It can take various forms, such as those mentioned earlier: physical support, psychosocial support and spiritual support. The entire care team will come together to ensure each aspect of end-of-life support is provided.

It will also often involve talking to you and your loved one about what to expect as their life draws to a close and should ensure that all of your wishes and needs, and those of your loved one, are fully adhered to.

It may also include some practical help, such as assistance with making a will or accessing financial support.

The most appropriate source of palliative care will depend upon the type of support and care that your loved one needs. You could make use of the services of a reputable private agency to provide home care or your loved one could be cared for in a nursing home, a care home, a hospital or a hospice.

If you think that your loved one might benefit from this type of care, you can speak to their GP or other healthcare professionals, or you can speak to a care agency that specialises in home-based care.

This is the first step to finding out precisely what type of care and palliative care models your loved one will benefit from, what form this should take and where it should be carried out.

If you’re opting to arrange palliative care in the home, choosing a home care provider can be a confusing task. Elder can help with arranging live-in care to support this type of care.

Cost of Palliative care

Hospice care

Hospice care is free; however, whether you stay in the hospice depends on your situation. They provide a range of services for adults and children, but it will only be suitable for some. Some people stay in a hospice for short periods of inpatient care or nursing before returning home, and others will move into a hospice in the months or weeks before death. Some hospices offer outpatient palliative services, such as psychological support and occupational therapy. To find out whether hospice care is right for you or your loved one, it’s best to start a conversation with your GP.

Care home

Many care homes and nursing homes offer palliative care services too. Staff can provide round-the-clock care – helping to manage pain symptoms, supporting with daily tasks such as washing and eating, and provide a comfortable life for patients.

Care homes generally cost anywhere between £700 – £2000 a week. However, how much palliative care costs in a care home will depend on your level or complexity of need and where you live in the UK.

Home-based palliative care

If you want to choose home-based palliative care, it’s important to weigh up whether you want to use a professional care service or want to manage care yourself with family and loved ones.

Unpaid carers need to carefully consider the decision to manage care, as if it makes financial sense initially, there will still be a range of expenses, such as transportation costs, holistic treatments, purchasing care-related items and mobility equipment.

Taking on the care of a loved one can also take an emotional and physical toll, often outweighing the financial benefits.

Elder can provide live-in care support for those who require palliative care. Our matching process ensures that the carer is the right person for the job and takes into account various things, such as specific conditions and personality.

This ensures they can provide personalised care and companionship for both the person receiving care and their medical team, as well as friends and family.

Generally, live-in care fees start at around £900 to £1,800 per week but can be as much as £2,000 per week – it all depends on how much care and support you need.

Palliative care with Elder

At Elder, our palliative live-in care is all about putting you and your family in control. We understand care can feel expensive, but our packages make the daily costs of live-in care as affordable as possible by ensuring your family only pays for the support you actually need.

Our pricing is tailored to the care needs of the individual – so to receive your personalised quote, give our friendly team a call. With every quote we promise:

No joining fee or unexpected costs
No surcharges on Bank Holidays or weekends
A one-week trial period, to see if care works for you and your family
No additional fee if you need to request a new carer
We’re not going to lock you into any long contracts. If your loved one’s care needs change, you’re able to leave with two weeks’ notice.

How to pay for Palliative care

Something people may not want to think about is how they’re going to afford the average cost of palliative care. However, it’s important to understand the options available to you. In many cases funding is available through the NHS continuing healthcare. For those nearing the end of their life, there is a fast-track service.

Unfortunately, having a terminal illness or condition won’t automatically qualify you for continuing healthcare funding. The severity of illness and your medical care needs will be assessed by a multidisciplinary team, usually made up of at least one professional from a healthcare background and one from a social care background. The assessment will look at how your health impacts the way you live your life, and how often you need the support of someone else.

For those living with dementia, NHS continuing healthcare isn’t always guaranteed, however funding can also be sought through a Local Authority or funding privately.

Care needs assessment

It doesn’t matter who you are, or how much money you have. If you think you need help, you should turn to your local council for help with the cost of care. This starts with them talking through your daily life to an idea of the support you need. This process is called care needs assessment. This assessment has the power to transform the care you receive because it clearly lays out for you exactly what care and support you need and why. It then goes on to recommend all the different options available so you can be cared for in the way that’s best for you.

Most councils will ask you to request an assessment either by telephone, in writing, or online. The first thing to do is visit your council’s website to confirm their exact application process. Ignore any advice you’re given which states that you should first complete a financial assessment before your care needs assessment. The Care Act 2014 clearly states that everyone has a right to a care needs assessment. Don’t let anyone persuade you otherwise.

Financial Assessment

The financial assessment is what the council uses to determine whether you’re responsible for paying for your own care.

The financial assessment and the care needs assessment go hand in hand. First, the care needs assessment determines what your needs are, and then the financial assessment determines how much caring for your needs will cost and who is going to pay for it.

Sometimes known as the ‘means test’ it’s incredibly important, but it’s often poorly understood. Just trying to understand what the financial assessment is and how it works can be challenging enough, let alone trying to understand how it all applies to your own case specifically. We want to change that. In this guide we’ve broken it down step by step, so you know how it works and exactly what you’re entitled to.

It’s really important to remember that you shouldn’t apply for a financial assessment before you have undergone a care needs assessment. The needs assessment should be completely impartial – so it’s best to ensure that ‘who is paying for what?’ doesn’t affect the outcome.

When you’ve confirmed your care needs assessment with the council, you can ask them directly how to apply for the financial assessment too. If you’ve already had a care needs assessment, but haven’t arranged a financial assessment, then get back in touch with your council to request it.