Hospice and Palliative Care Support

Palliative care is care that aims to improve comfort and quality of life when someone has a serious or life-limiting condition. It looks at pain and other symptoms, but also at how someone is feeling emotionally, and at the practical worries that often come alongside illness.

Hospice care is one form of palliative support. Hospices are organisations — not only buildings — that provide specialist palliative care to people and their families, in a range of settings.

The two terms overlap, but they are not always used to mean exactly the same thing, and different services describe what they offer in slightly different ways. If you are unsure what is being offered, it is entirely reasonable to ask a healthcare professional to explain it in plain terms.

Beginning palliative or hospice support does not automatically mean that other treatment must stop. For some people, palliative support runs alongside treatment for their condition. What happens depends on the person’s situation, their wishes and the advice of their clinical team.

A common belief is that a hospice is simply a place people go to die. That picture is out of date and leaves out most of what hospices actually do.

Support may begin much earlier — sometimes soon after a diagnosis of a life-limiting condition — and may continue for weeks, months or longer, depending on the person’s needs and on the services available in their area. Some people receive hospice support for a period, feel more settled, and have less involvement for a while before it increases again.

Being referred does not mean that anyone has given up. In many cases the purpose is the opposite: to relieve symptoms, reduce fear, and give someone more good days.

Palliative and hospice support is offered to people living with a wide range of serious or life-limiting conditions. That may include people living with:

• Cancer
• Dementia
• Motor neurone disease
• Advanced heart disease
• Advanced lung disease
• Advanced liver disease
• Advanced kidney disease
• Other neurological conditions
• Frailty, often alongside several long-term conditions
• Other serious or life-limiting illnesses

This is not a complete list and it is not an eligibility checklist. Eligibility is assessed individually, based on a person’s needs and the services their local hospice or NHS team can provide.

Depending on the service, support may include:

• Pain and symptom management, including breathlessness, sickness and poor sleep.
• Nursing and medical support from staff experienced in palliative care.
• Emotional and psychological support for the person and those close to them.
• Practical and social support, such as help understanding what happens next.
• Physiotherapy and occupational therapy where these are available.
• Complementary therapies where a hospice chooses to offer them.
• Spiritual or pastoral support, if the person wants it — and only if they want it.
• Help planning care and talking through personal wishes and priorities.
• Support for family members and carers.
• Short breaks and respite care where a service can provide them.
• Support before and after a bereavement.

Services differ between hospices. Two hospices a few miles apart may offer quite different things, so it is always worth asking your local service what it can provide.

Hospice and palliative support may be offered:

• In the person’s own home.
• Through a hospice-at-home service.
• At a hospice as a day or outpatient visitor.
• During a short inpatient stay at a hospice.
• In a hospital, care home or another community setting.

A hospice building is only one part of hospice care. Many people who are supported by a hospice never stay in one overnight, and a large amount of hospice work happens in people’s own homes.

A person, a family member or a carer can ask about a referral. The usual route is to speak to a healthcare professional already involved in the person’s care, such as:

• Their GP
• Their hospital consultant
• A specialist nurse
• A community or district nurse
• Another member of their healthcare team

Some hospices also accept direct enquiries or self-referrals. Because referral arrangements and eligibility differ from place to place, please check with your local hospice about how it prefers to be contacted.

You do not need to have the right words ready. It is enough to say that things feel harder than they were, and to ask whether palliative or hospice support might help.

After a referral, the hospice team will normally arrange to talk with the person, and often with the family, to understand what is happening and what would help. This is usually an unhurried conversation rather than a test.

The team will generally:

• Assess the person’s symptoms, needs and circumstances.
• Explain what the service can and cannot offer.
• Ask what matters most to the person and their family.
• Agree what happens next, and who to contact.

A referral does not automatically mean admission to a hospice building. For many people it means support at home, an outpatient appointment or advice for the team already caring for them.

Hospice care is generally free to patients and their families. You should not be asked to pay for hospice care in the UK.

Many hospices are independent charities that are funded through a combination of statutory NHS funding and voluntary donations, with the balance between the two differing from hospice to hospice. Some palliative care is provided directly by NHS services.

Because funding arrangements affect what each hospice is able to offer, the range of services can vary between areas. If you are unsure whether something is available to you, ask the service directly.

Hospice support is often described as care for the whole family. Depending on the service, help for family members and carers may include:

• Emotional support and someone to talk to.
• Practical advice about caring day to day.
• Respite or short breaks where these are available.
• Counselling.
• Support groups, in person or online.
• Bereavement support before and after a death.

Carers can ask the hospice what help is available to them personally, not only to the person who is ill. Many people never think to ask, and are surprised by what is offered.

Children’s hospices support babies, children and young people with life-limiting or life-threatening conditions, together with parents, brothers and sisters, and other close family members.

Support may include:

• Care at home.
• Short breaks for the child and for the family.
• Play, activities and time that feels ordinary and enjoyable.
• Symptom management.
• Emotional support for the whole family, including siblings.
• End-of-life care.
• Bereavement support.

Services vary locally, and children’s palliative care is often organised differently from adult services. Together for Short Lives provides information for families across the UK and can help you understand what may be available.

Some people find it steadying to talk about what they would want in future. Others prefer not to, or would rather wait. Both are perfectly acceptable.

Conversations of this kind often cover:

• Where the person would prefer to receive care.
• Who they would like to be involved in decisions.
• What matters most to them day to day.
• Anything they would prefer to avoid, if possible.

There is no obligation to complete any documents. If you would like to understand the options, you can ask a GP, nurse or hospice professional to explain advance care planning and what it does and does not involve.

Wishes are not fixed for ever. They can be talked about again and reviewed if circumstances or feelings change.

It can help to write questions down before an appointment or a first conversation with a hospice. These are a reasonable place to start:

• What support can you provide?
• Can care be provided at home?
• Who can we contact during the night or at weekends?
• Is respite or short-break care available?
• What help is available for family members and carers?
• Are transport arrangements available?
• What should we do if symptoms suddenly worsen?
• Can our care preferences be reviewed later?

If you do not follow an answer, it is fine to ask for it again more simply. Good services expect this and would rather explain twice than leave you unsure.

These are official or well-established UK sources of information about hospice and palliative care. Availability and eligibility differ locally, so please confirm details with the service itself.

We cannot arrange hospice care, and we do not give medical advice. What we can do is help with the paperwork and the wording, which is often the part people find hardest when they are already tired.

We may be able to help you:

• Prepare questions before an appointment.
• Organise letters, notes and information in one place.
• Draft a letter or email to a GP, healthcare team, hospice or other service.
• Put a concern or complaint into clear, polite writing.

Sixpence Support UK does not provide medical advice, hospice referrals, counselling or emergency assistance.