In this article
The word hospice was first used in 19th-century France to describe a place specifically for the dying. Today, about 30% of people dying in the UK receive help at some stage from one of over 200 UK hospices or from one of over 50 specialist children’s hospices, with about one in 10 people dying in one of the beds they provide.
The modern hospice movement in the UK was founded by Cicely Saunders, who founded St Christopher’s Hospice in 1967 as the first hospice linking expert pain and symptom control, compassionate care, teaching and clinical research. Her vision was for a holistic approach, caring for a patient’s physical, spiritual and psychological wellbeing, which marked a new beginning, not only for the care of the dying but also for the practice of medicine as a whole.
What is hospice care?
Hospices provide specialist care for people who need their help to continue to live well following the diagnosis of a terminal illness, and, when the time comes, to ensure they can die with dignity in the place that is right for them. There are hospices for adults, for children and for young people.
Hospices are not just for the last days of someone’s life, they offer services at all and at any stage of a person’s terminal condition. They also offer a range of support, often alongside active treatment for an illness. The focus of modern hospice care is on helping people to live well until they die, to help with all their needs, emotional and/or physical, and to provide support for loved ones caring for terminally ill people.
The Care Quality Commission (CQC) found that hospice care across England has the highest percentage of health and social care services that are rated outstanding, at 25%, and a further 70% are rated good, with hospice leaders and frontline staff displaying a strong commitment to providing truly person-centred, compassionate care and support to people using their services, and their loved ones. They also found that hospices develop strong relationships with other services in the area of healthcare.
The characteristics of hospice care contributing to a positive experience that the CQC assessed and found in 95% of the hospices that they inspected include:
- Hospice care is led by people’s needs – The care of the individuals receiving hospice care is led by their needs. To that end it is highly personalised and reviewed on a regular basis to ensure an approach that acknowledges changing needs.
- Hospice care embraces family carers – Hospices recognise family carers’ vital and indispensable role in caring for someone affected by life-shortening conditions. It seeks to support them and works in partnership with them, recognising their important and often expert contribution.
- Hospice care is expert in nature – All those who work in hospices have expert skills and knowledge. Each person also plays a part in teaching others, using, reflecting upon and sharing their extensive experience in delivering palliative and end-of-life care day in and day out. The expertise of hospices allows them to address the most complex of needs in their patients or their families. Importantly, this complexity extends beyond clinical symptoms to include much else that is vital to living well, including social, emotional, spiritual and financial needs.
- Hospice care is innovative – Hospices are part of a movement that has produced radical innovations in institutions, services and beliefs.
- Hospice care is integrated – Being integrated means combining efforts with the NHS, local authorities, care homes and other providers in order to work together to improve care for all who have life-shortening conditions wherever they are.
Why do people go to a hospice?
Hospices can provide care for people from the point at which their illness is diagnosed as terminal, to the end of their life. Many people think that you only go into a hospice when you are dying, but this is not true. People often go into a hospice for a few days early on in their illness to help control symptoms such as pain or breathlessness, and then go home again.
There are people who have a number of periods of hospice care during their illness, depending on their condition and their wants and needs. They may discontinue hospice care at any time, and can resume hospice care at a later date if their condition declines.
For others, they may not have utilised hospice care on their terminal diagnosis or at the earlier stages of their illness; however, as their conditions progress, people may consider hospice care when they experience, for example:
- Frequent visits to the A and E department or an increase in hospital admissions.
- A decline in their ability to perform daily tasks including eating, getting dressed, walking, or using the bathroom.
- An increase in falls or unstable mobility.
- Uncontrolled pain, shortness of breath, nausea or vomiting.
- Decreasing alertness, withdrawal, increased sleeping, mental confusion or changes to their mental abilities.
- Reduced desire to eat, leading to significant weight loss and changes in body composition.
- Skin tears, infections, and other signs of deteriorating health.
- The decision to focus on quality of life, instead of aggressive treatments.
People may also go into a hospice for respite care, usually for a short stay, so that their family or carers can have a break from looking after them.
Where is hospice care provided?
Most people think of hospice care as care provided in a specific physical building, that a patient would “go into” a hospice. Whilst there are many physical hospice settings, hospice care is described more accurately as a style of care, rather than something that takes place in a specific building.
Hospice care can be provided at a person’s own home, in assisted living or nursing homes, in a care home, or in the hospice building itself. People can either be in-patients or out-patients by visiting the facility, or receiving care wherever they are living.
Who provides hospice care?
In the UK, hospice care is free, paid for through a combination of NHS funding and public donations, and most hospice care is provided by charitable hospices. The NHS also provides hospice and palliative care. GPs, district nurses, paid carers and health and social care staff in hospitals and care homes can provide some palliative care. However, they will use a hospice or palliative care team when more specialist support is needed. A GP or hospital doctor would usually refer someone for hospice care, although some hospices do take self-referrals.
What does hospice care cover?
Hospices not only give medical care, including pain management to people who are terminally ill, but their holistic care can also provide a variety of other services.
Although these may vary depending upon the hospice care provider, care can cover:
- Any medication, supplies and medical equipment related to the person’s diagnosis.
- Nursing and/or doctors to address physical symptoms.
- Occupational therapy.
- Complementary therapies, such as massage.
- Personal care including bathing and grooming.
- Information and advice in relation to non-medical aspects of the individual’s life, such as financial advice.
- Counselling support.
- Support services at the individual’s place of residence.
- Religious ministers to provide spiritual comfort.
- Volunteers to provide additional companionship, practical help etc.
- Respite care so family carers can have a break from caring for a short time.
- Bereavement support for the family after their loved one has passed away.
As hospice care is holistic and focused on the needs of the individual, patients should speak to their hospice provider about their own personal circumstances.
Who works at a hospice?
Unlike other healthcare career choices, a career in hospice care does not revolve around patients seeking curative treatment. Hospice care is a specialised field comprised of healthcare and other professionals focused on providing for a terminally ill patient’s physical, spiritual and psychological needs, wants and wellbeing. Their work involves improving the quality of life for patients and their families, who may be facing the many challenges of living with a life-limiting illness and providing care for their ultimate end of life.
Working in a hospice care environment can be both challenging and rewarding. People who choose to work in this field are often drawn from a variety of backgrounds, education and experiences, but in common they have compassion and a genuine interest in caring for patients who have a life-limiting illness.
A hospice care team might include:
- Healthcare assistants.
- Social workers.
- Bereavement specialists.
- Trained volunteers.
Others who may be working in the wider hospice environment either as salaried staff or volunteers might include:
- Administration and management.
- Maintenance staff.
- Catering staff.
- Retail staff.
- Occupational therapists.
- Event organisers and staff.
- General volunteers who help with everything from grocery shopping, visiting and gardening, to dog walking, DIY and hairdressing.
When does hospice care start?
To be eligible for hospice care, a person would need to have been diagnosed with an active, progressive and potentially life-threatening disease or with a life-limiting condition that is long term and cannot be cured. Hospice care usually starts from the point at which their illness is diagnosed as terminal through to the end of their life, however long that may be.
Although a person may be eligible to access hospice care on terminal diagnosis, they may choose to delay utilising the services until later in their illness or decide that hospice care is not for them, preferring palliative care only. People have the right to refuse hospice care and treatment, although their refusal may be an initial reaction based on fear. Hospice care will be available if ever and whenever they are ready to access it.
How long do people stay at a hospice?
In the UK, there is no set limit on the amount of time an individual can remain in hospice care, whether this is as an in-patient or as an out-patient, or even a combination of both. Hospice care does not need to be continuous, and many people take a break from hospice care if their condition has become stable and they are feeling well.
It is another misconception that hospice care is only reserved for the final days of life. Hospice care can provide comfort and relief for months. The length of stay will depend on the individual’s circumstances, but on average people stay for around two weeks, although often people might stay longer.
Hospice care is well-suited for months of life, not days, and patients often are discharged from hospice care if their condition improves, and their treatment can be resumed. If their life expectancy changes, to say, beyond six months, they may not need hospice care for some time. If, however, a discharged patient’s condition later deteriorates, they can be readmitted to hospice care.
What is the difference between palliative care and hospice care?
Most people may think that palliative care and hospice care are the same things; however, although they are similar in a lot of ways they are not exactly the same.
The word palliative means “relieving pain without dealing with the cause of the condition”. The aim of palliative care is to give a person the best quality of life they can possibly attain despite the circumstances.
Palliative care begins at the moment of diagnosis and this is one of the key differences from hospice care. It is used to try and manage any pain the person may be feeling, and to provide for their physical, mental, social and spiritual needs. A care plan and support system are established for the individual concerned to ensure a dignified experience where the person’s needs come first. It also offers some support to families and loved ones of the individual concerned.
Hospice care crosses over with palliative care in quite a few ways, but one of the main differences is that hospice care is usually provided during the later stages of an illness.
In the last few months, hospice care has been highlighted by the illness and sad death of Dame Deborah James, known as Bowel Babe who moved to home hospice care to receive end-of-life care. Writing on Instagram, she said: “Moving to home hospice care has been scary but I cannot tell you how kind and understanding everyone I’m meeting from @wsbhospices is.”
The Worldwide Hospice Palliative Care Alliance (WHPCA) is an international non-governmental organisation focusing exclusively on hospice and palliative care development worldwide. They are organising World Hospice and Palliative Care Day on 8th October 2022, as an annual unified day of action to celebrate and support hospice and palliative care around the world; the theme for 2022 is Healing Hearts and Communities.