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Figures from the Office of Health Economics show that around 378,000 people receive palliative care each year in England alone. However, the growing numbers of elderly people in the UK due to increased life expectancy as well as the increase in the number of people living with a chronic illness may mean that more people will need palliative care in the years to come.
Let us unpack this a little before we explore further what palliative care entails. A research article from Etkind et al. aimed to estimate the need for palliative care in 2040.
The research showed that “annual deaths in England and Wales are projected to rise by 25.4%” by 2040. In looking at the sex- and age-specific proportions of those who needed palliative care in 2014, and keeping those proportions the same, Etkind et al. estimated that the number of people who will require palliative care is expected to grow by 25%, to a figure of around 469,000 people.
Having said that, the researchers also examined the upward trend in the eight years preceding 2014 and calculated that if this trend continues, the increase in the need for palliative care will be over 42%, totalling over 537,000 people.
Aside from these harrowing figures, the research also shows that the main drivers of this increase will be largely related to specific diseases such as dementia and cancer. With such huge numbers, understanding what palliative care is and how it can benefit those with life-limiting health conditions or those at the end of their life has never been more important.
What is palliative care?
The National Institute for Health and Care Excellence (NICE) defines palliative care as “the holistic care of people with advanced, progressive illness”.
It also refers to the World Health Organization’s definition that palliative care is:
“an approach that improves the quality of life for patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”
From NICE’s simple definition through to the WHO’s more detailed one, it is evident that palliative care relates to a person’s whole well-being and that of their family or loved ones too.
The aim of such care, therefore, is to achieve the best quality of life for patients and families. Palliative care aims to be holistic, dealing with the person as a whole rather than their illness being a separate entity and simply dealing with that.
In sum, palliative care encompasses the following:
- Pain management.
- Relief from distressing symptoms.
- Spiritual and psychological care.
- Support for people to be as active as possible until their death.
- Practical support such as finding equipment or planning for the future.
- Support for the family of the patient during their illness and in bereavement.
- Improvement in the quality of life.
Aside from the above, it is important to understand that palliative care does not intend to hasten death nor postpone it. Palliative care is not quite the same thing as end-of-life care. Of course, end-of-life care is palliative by its very nature, but palliative care can begin whilst someone is still receiving treatment or therapies to treat an illness.
Where is palliative care provided?
Given that palliative care is holistic, it is provided in many different places.
These can include:
- At home.
- Care or nursing homes.
- Outpatient clinics.
When someone is referred for palliative care, the referring healthcare professional is usually able to signpost the patient to the services in their area and where they can be found.
What is palliative care at home?
Palliative care at home allows a person to remain in familiar surroundings until the end of their life or for as long as is possible.
Palliative care at home encompasses almost all aspects of palliative care in other settings such as help with personal care, grooming, medication, caring for pressure sores, household tasks, making meals, companionship and psychological support. However, it also has the additional benefit for many in that it is familiar and comfortable as well as being where many people want to be.
When it comes to end-of-life palliative care, nurses and carers can remain in the family home with the patient to assist with their needs and manage their symptoms. At this point, palliative care can become a ‘live-in’ care arrangement or there could be a team of nurses and carers that work in shifts alongside family.
What is palliative care in hospital?
According to Paul Paes et al., around half of people still die in hospital settings and therefore receive palliative and end-of-life care in hospitals. However, they explain that the financial pressures within social care and the NHS combined with the increased complexity of patient needs have given rise to concerns around the quality of palliative care in hospital settings.
Indeed, the focus for palliative care in the last decade has been on moving a lot of hospital-based palliative care into community and hospice settings. The driver of this has largely been patient preference as well as the resulting variability in the care provided by hospitals. However, the setting is not often the focus when it comes to end-of-life care; the quality of care is what is important for those receiving it.
At present, most patients who are referred to a hospital palliative care team receive advice and input, but their care remains the responsibility of the referring clinician (perhaps their GP or hospital consultant or department).
The palliative care team in a hospital often provide one-off interventions or advice. More often, if the needs are greater or increase, patients are referred to a hospice setting within another organisation and most often in a different location. Therefore, palliative care in hospitals is not always as integrated as it could be.
Some hospitals are now establishing a Palliative Care Unit (PCU) within the hospital. These units are well-designed so that patients and families benefit from the setting that is calmer and has appropriate facilities for their needs such as more private spaces, en suite rooms, and family areas for loved ones to rest or take some time.
PCUs allow for shared care between hospital teams and palliative care teams which is not easily possible in other care settings. In comparison with hospices, they can offer higher levels of medical intervention and support. The units are often created by reallocating medical beds and therefore do not necessarily incur greater costs for hospitals to run.
As outlined by Paes et al. Palliative Care Units are now recommended as a model of good practice when it comes to palliative care in hospitals.
What is hospice palliative care?
Many people who are facing life-limiting and terminal diagnoses opt for palliative care in a hospice setting. Hospices focus on comfort, care and quality of life particularly for those facing the end of their life. Hospice care does not need to be continuous nor does it only support those who are inpatients.
Hospice care is often provided at home as well as within the hospice itself. It is not the building or location that defines it; hospice care is a style of care.
It includes nursing and medical care as well as physiotherapy, occupational therapy, rehabilitation, complementary therapies such as aromatherapy and massage, respite care, psychological, spiritual and financial support as well as bereavement care.
Who provides palliative care?
Palliative care teams differ depending on the area or their location.
A palliative care team often includes:
- District Nurses.
- Social Workers.
- Occupational Therapists.
- Clinical Nurse Specialists.
- Specialist nurses such as Marie Curie Nurses or Macmillan Nurses.
- Health Care Assistants.
- Spiritual or religious advisers.
- Nutrition support.
- Complementary therapists.
Palliative care teams differ depending on individual needs. Palliative care takes a multidisciplinary approach in hospitals and hospices as well as in the community. They often provide specific end-of-life care too. Palliative care teams are professionals and ideally should be involved in a patient’s care as soon as possible after a diagnosis.
Assessments would then be carried out to assess a person’s needs and consider their wishes. Each professional in the team plays a different yet equally important role.
If a person is receiving palliative care at home, their GP will often have an important role which would involve:
- Prescribing medication.
- Managing symptoms.
- Asking about needs and wishes.
- Signposting to other services and information.
- Liaising with district nurses and the palliative care team to ensure that the person’s care is as it should be.
District nurses visit patients in their homes if they are unable to receive treatment elsewhere or attend appointments.
They may also:
- Give medical care such as changing dressings or managing symptoms.
- Order medical equipment such as adjustable beds or commodes.
- Organise care within the home.
- Arrange for services to attend such as physiotherapists or specialist nurses such as Marie Curie nurses or Macmillan nurses.
Pharmacists liaise with palliative care teams and are community-based. They support those receiving palliative care by dispensing medication and working with others in the team to ensure that those in their care are getting the right support. Many pharmacies now have specialist palliative care pharmacists who are trained in offering more specialised support.
Marie Curie nurses
Marie Curie is the leading end-of-life charity in the UK. They offer nursing care and hospice care for those nearing the end of their lives. Marie Curie nurses can offer advice on prescribed medication and help to plan the care that someone may need.
Marie Curie nurses also assist families by being present with them at the end of their loved one’s life if they are dying at home. They help explain the process to family members and offer support and guidance through this difficult time.
Healthcare assistants help with the washing, dressing and mobility of those in their care. They also assist in helping patients take medication.
Social workers liaise with a palliative care team to help organise meal deliveries or adapt a person’s home to help them with their daily tasks. They can also offer help with domestic and care tasks such as preparing meals, washing and dressing. They also offer emotional support and help to plan for the future wishes of those in their care.
Aside from working with the patient, social workers can also signpost family members to places of support. They may find help with transport such as taxi fares or help arrange respite care so that family members can have a break. Social workers also assist with financial assessments to help family carers receive any financial support that they are entitled to.
Clinical Nurse Specialists (CNS)
Clinical nurse specialists usually meet patients after their diagnosis. They help to ensure that the patient and their family have all the information that they need regarding the diagnosis and guide them through any questions that they may have. CNSs also provide emotional and practical support for the family and can put them in touch with specialist palliative care services.
Occupational therapists are often wrongly thought to be about helping people with their ‘occupation’. However, their role is simply in helping people to complete their everyday tasks. They often start with an assessment and take a look at the person’s living arrangements and whether they need adaptations or equipment. They then arrange for the equipment or adaptations to be put in place.
Physiotherapists work with people to help them with their mobility and movement after their diagnosis or after treatments or surgeries that may have affected this. They also teach patients exercises for them to help ease and self-manage their movement or mobility problems.
Macmillan nurses are nurses that are specifically trained to care for those affected by cancer. They help with symptom control and offer advice and information on treatments.
Counsellors and spiritual advisers
Counsellors work to support a person’s emotional well-being. They help the person process their thoughts and emotions on death and dying. Spiritual advisers can help with spiritual beliefs if the person wishes.
Who benefits from palliative care?
According to Marie Curie, palliative care does not just care for the patient. Of course, the aim is to care for them holistically, but this also includes their families by nature.
Palliative care is designed to offer a holistic approach for someone with a life-limiting condition or someone coming towards the end of their life, however near or far that may be.
Family and friends
Whilst in the past, care was centred solely on the patient, increasingly palliative care offers support and care for the patient’s family. The impact of a terminal diagnosis is very difficult for families to process. Often, the patient themselves has greater concern for those they will be leaving behind after their death. As such, palliative care takes the family’s needs into account and ensures that they are also supported.
When would palliative care be used?
According to the National Institute of Nursing Research, it is never too early to start palliative care. Palliative care should start when other treatments do, and it should not be dependent on where in their journey a patient is.
Palliative care aims to improve quality of life and the sooner that it is started, the greater the impact it could have. Getting to know a patient before a significant decline is preferable as it is then easier to get to know the patient’s wishes before this becomes more difficult.
Is palliative care the same as end-of-life care?
Palliative care and end-of-life care are different. Palliative care does include end-of-life care, but all palliative care is not end-of-life care. Palliative care includes a broader spectrum of care and generally happens over a longer period. People can have palliative care for many years.
Palliative care becomes end-of-life care when the person’s prognosis is that they are likely to die within the next 12 months. However, death is not always easy to predict and so end-of-life can be for those whose death is much more imminent as well as those who live much longer than expected. When palliative care becomes end-of-life care, it may last days or months depending on the person’s condition and prognosis.
End-of-life care is for those who:
- Have an incurable illness in its advanced stages such as dementia, motor neurone disease or cancer.
- Have co-existing conditions and are frail.
- Are at risk of dying from a sudden change in their condition.
- Have had an acute crisis such as a stroke or catastrophic accident.
What is involved in palliative care?
To sum up, as mentioned, palliative care is a whole-person holistic way of caring for someone and their family.
- Treatments for symptoms including pain.
- Discussion of choices when it comes to treatments and symptom management.
- Goal setting and planning for the future.
- The coordination of treatment between different places and disciplines.
- Transitions between settings and stages in treatment.
- Emotional support for the person and their family.
- Access to 24-hour care and support.
- Support with medication.
- Physical care and assistance.
- Support with nutrition and daily living tasks.
Death and dying are not something that many people feel comfortable discussing. However, death is a part of life and, as such, the dying process should be looked at accordingly. It’s the only thing that is guaranteed in life. Having a ‘good’ death, therefore, includes all the care that leads up to the moment of our parting from the world.
Given that the number of those needing palliative care is growing, forward planning and thinking about our own deaths is something that most people should consider ahead of when the time comes.
With the introduction of new Palliative Care Units in some hospitals, there is hopefully a time on the horizon when everyone can receive good-quality care from the moment of a terminal diagnosis to the day that they die.