The Role of Palliative Care in End of Life Care

April 2, 2024

In this post

Introduction

When a person reaches the end of their life, they can be uncomfortable, in pain and have distressing symptoms, which can also be upsetting for families, caregivers and friends. Palliative care (also known as supportive care) is crucial in providing compassionate and comprehensive end-of-life care and supporting people in their last months or years. In England, an estimated 378,427 people receive palliative care annually (OHE).

Palliative care is a specialised approach to caring for people with serious, incurable illnesses. It focuses on managing their symptoms and enhancing their quality of life. While palliative care is not restricted to end-of-life care, as it is for any stage of a person’s illness, it is a fundamental part of this process. As NHS England states, “palliative and end of life care affects us all, at all ages; the living, the dying and the bereaved”.

This blog post aims to educate readers about the significance of palliative care, dispel common misconceptions, and highlight its positive impacts on patients and their families during this challenging phase of life.

Defining Palliative Care

The World Health Organisation (WHO) defines palliative care as:

“An approach that improves the quality of life of patients – adults and children – and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, impeccable assessment and treatment of pain and other problems, whether physical, psychosocial, or spiritual.”

End-of-life care refers to the last year of a person’s life (NHS England) and is a form of palliative care. When a person is close to the end of their life due to an incurable (terminal) illness, they receive palliative care, which primarily focuses on:

Managing their pain and other symptoms.
Making them as comfortable as possible.
Providing practical, emotional, psychological and spiritual support.
Improving their quality of life and also that of their families, caregivers and friends.

Terminally ill people can receive palliative care in various settings, such as their own homes, hospitals, hospices, care homes and nursing homes, which will depend on a person’s needs and preferences.

Many healthcare professionals can be involved in palliative care, such as (this list is not exhaustive):

GP’s
Hospital doctors and nurses.
Community nurses.
Consultants specialising in palliative care.
Palliative care nurses.
Occupational therapists.
Complementary therapists.
Counsellors.
Chaplains.
Social care workers
Physiotherapists.
Hospice staff.
Other nurses, e.g. Macmillan or Marie Curie.

These professionals can make up palliative care teams, which collaborate on caring for people with terminal illnesses and their families and caregivers.

Patients and their families are often worried when they hear the term palliative care and may think they have not got long to live and need to go into a hospice. However, this is not the case. People can live with serious illnesses for many years and do not go into hospice care.

While palliative care and hospice care both support people with serious illnesses and aim to relieve their symptoms and improve their quality of life, there are differences.

Palliative care	Hospice care
It becomes available on diagnosis of a serious illness, but not always where a person is at the end of their life.It is appropriate for any stage of a serious illness.It can work alongside curative treatments, such as chemotherapy for cancer.	It becomes available from the point of a diagnosis of a terminal illness to the end of a person’s lifeIt is usually appropriate in the last months or years of a person’s life.It does not continue to try to cure the illness but manage the symptoms.

Further information on hospice care is on:

The Holistic Approach of Palliative Care

When healthcare is holistic, it means looking after the whole person, not just their symptoms or illness. Palliative care is a person-centred approach with a holistic nature, as it addresses a person’s physical, emotional, psychological, and spiritual needs.

Physical – some terminal illnesses and treatments can cause pain and other physical symptoms, e.g. fatigue, sickness and insomnia. It may also affect mobility, especially at the end of life. Palliative care may involve pain medication, physiotherapy, radiotherapy and complementary therapies.
Emotional (social) – people with terminal illnesses will go through many challenging emotions and may be in emotional distress about being at the end of their lives. They may also have concerns about their families and finances. In palliative care, healthcare professionals will assess individual needs and provide emotional care and support to patients and their families,
Psychological – being diagnosed with a terminal illness can significantly impact a person’s mental health and well-being and also their family, caregivers and friends. Palliative care provides help and support for those experiencing psychological problems relating to diagnoses and treatments, e.g. counselling and other therapies.
Spiritual – is an essential part of palliative care. When someone has a terminal illness, spiritual needs may change, and they may look for meaning in their life. In palliative care, healthcare professionals will assess a patient’s spiritual needs and provide appropriate support, e.g. chaplaincy.

Palliative care is not for curing serious illnesses; it is there to help terminally ill people with their symptoms and improve their quality of life. Healthcare professionals may use it in conjunction with curative treatments, e.g. surgery, radiation and chemotherapy, and actually complements them by:

Helping with physical and emotional symptoms.
Controlling the side effects of conventional medical treatments.
Reducing stress and anxiety and improving psychological and mental well-being.

Research has found that the early use of palliative care correlates with improved survival in patients with metastatic cancer, reduced cost of care, and improved quality of life. (Teoli, et al. 2023).

Palliative Care Across the Continuum of Illness

When a person is diagnosed with a serious illness, palliative care becomes available. However, it is not limited to end-of-life care; it can be integrated at any stage and prognosis and during any treatment. Some have palliative care for days and weeks, and others have it for a long time, even years in some cases. How long palliative care lasts will depend on the individual and their needs, but it is an essential part of their journey. Further information on the stages of palliative care.

Palliative care can be beneficial for all types of serious illnesses and conditions, such as (this list is not exhaustive):

Cancer – this is the illness that palliative care is most associated with. People with any type or stage of cancer can receive it on diagnosis, throughout treatment, and beyond.
Heart disease – palliative care can help people who have heart disease, such as heart failure, which can cause specific symptoms, such as breathlessness, fatigue and swelling.
Lung disease – people with life-limiting lung diseases, such as chronic obstructive pulmonary disease (COPD), can benefit from palliative care, as it provides additional support for their symptoms, e.g. breathlessness, coughing and flare-ups.
Kidney failure – people with kidney failure (on dialysis or not) can receive palliative care to manage symptoms, such as pain, nausea and breathing problems.
Dementia, including Alzheimer’s disease – people with dementia or Alzheimer’s disease have complex needs and issues with their thinking, memory, behaviour and mobility, which can be difficult for them and their families, carers and friends. Palliative care manages and treats the symptoms of pain and agitation and can provide therapies to help with speech, language and mobility.

Palliative care helps terminally ill people to:

Manage the symptoms of these illnesses and conditions and those caused by treatments, e.g. chemotherapy and radiotherapy.
Know what to expect during their illnesses and understand their conditions better.
Communicate with doctors about their illnesses.
Evaluate treatment options and make critical decisions.
Help cope with concerns and emotional, physical, spiritual and psychological issues.

Symptom Management

One of the main aims of palliative care is to treat, manage and relieve the distressing symptoms and discomfort of terminal illnesses. Every person is an individual, and their end-of-life symptoms will vary, but may include some of the following:

Pain.
Breathlessness.
Swelling.
Tiredness and fatigue.
Nausea.
Vomiting.
Appetite loss.
Constipation.
Delirium.

Palliative care specialists can manage a terminally ill person’s symptoms by various means, which depend on their illness and needs. Some examples include:

Pain-relieving medicines (analgesics) – are used regularly in end-of-life palliative care, e.g. paracetamol, codeine and morphine, to help relieve a person’s pain. There may be side effects associated with medicines, e.g. nausea. However, the palliative care team will help manage these by other medications or complementary therapies.
Complementary therapies – in some cases, palliative care may include complementary therapies, sometimes given alongside conventional medicines. Some examples include acupuncture, aromatherapy, hypnotherapy, massage, meditation, reflexology, etc. It can help people with physical symptoms, such as nausea, and emotional and psychological symptoms, e.g. stress, anxiousness and depression. It can help them feel more relaxed, thus improving their mental well-being.
Counselling or cognitive behavioural therapy (CBT) – these are talking therapies that are used in palliative care if a terminally ill person’s physical symptoms are causing them psychological distress. It can also help them if they have any psychological or mental health issues, such as anxiety and depression.
Physiotherapy – in palliative care, this involves exercise and manipulation to help restore the patient’s function and mobility affected by symptoms such as pain, breathlessness, fatigue and swelling. It can also include teaching patients exercises to help them cope with their symptoms.

Managing symptoms does not mean eliminating them. It is about controlling them to a level where a person feels comfortable and has a good quality of life.

While having a terminal illness and the symptoms can be harrowing for patients and their families, there are many examples of people whose symptoms have been relieved through palliative care. Here is some further information and stories:

Cancer Research UK – “people with cancer most often use hypnotherapy for sickness or pain. There is some evidence that hypnotherapy helps with these symptoms. It can also help with depression, anxiety and stress.”
Healthcare Communication Matters – Clair tells her story of how she benefited from early access to palliative care and how it helped to manage her pain.
Therapy Directory – has some examples of how complementary therapies may provide additional relief from physical and emotional symptoms.
Ashgate Hospice – the physiotherapy team at Ashgate Hospice have embraced acupuncture to alleviate pain and enhance overall quality of life.

Emotional and Psychological Support

When a person is diagnosed with a terminal illness, it can be hard to come to terms with this news. They, their families, caregivers and friends may go through psychological distress and experience many emotions, such as shock, anger, fear, grief, hopelessness, sadness, regret, frustration, denial, acceptance, relief, etc. These emotions may become stronger on approaching the last few weeks and days of life.

Emotional and psychological support has an essential role in palliative care, as it is part of a holistic approach and helps patients and those caring for them to:

Relieve some of the psychological distress by reducing stress and anxiety.
Cope with their emotions, improve resilience and boost their overall well-being.
Not feel isolated or lonely, which can lead to anxiety and depression.
Talk about things with professionals, as they may feel uncomfortable talking about difficult subjects with each other.
Improve their quality of life by staying connected to others.

Emotional and psychological support in palliative care can include:

Counselling – is a talking therapy where terminally ill people and/or their families talk to a trained therapist who listens to them and helps them find ways to deal with the emotions that come with serious illnesses. It allows them to explore their emotions in a safe and non-judgmental space.
Cognitive behavioural therapy (CBT) – is also a type of talking therapy that helps those affected by terminal diagnoses to learn skills on how to cope with their serious illnesses. It helps them look at and alter their attitudes and the way they think and behave to improve their state of mind.
Spiritual advice – spiritual advisers or local religious leaders can talk with patients and their families about their faith/spiritual beliefs and their feelings about death and dying. It can provide comfort and solace and help them to decide on their funeral wishes.
Support groups – having others going through the same thing and talking with them can help people and their families feel like they are not alone. They may be able to share advice and guidance on how to cope better. There are also numerous clubs and societies that they could join to have a chat with like-minded people.
Social worker support – a serious illness can bring other worries, such as financial concerns. Social workers can support terminally ill people and their families on emotional and social issues. They can also advise on benefits, social care and additional support.

Communication and Advance Care Planning

Communicating with terminally ill patients and their families can often be challenging, as it will require giving complex and distressing information and having difficult conversations. Open and honest communication is essential in palliative care as it establishes trusting and empathetic relationships between patients, their families/caregivers and healthcare professionals. It also:

Helps healthcare professionals understand and meet the needs and preferences of patients and their families.
Supports patients to make informed decisions regarding their care.
Allows patients to express their feelings, fears, desires and wishes.
Enables healthcare professionals and those in the palliative care team to collaborate effectively to provide the best possible support and care to patients and their families.

For communication to be open and honest, healthcare professionals must ensure:

They provide person-centred care.
Appropriate information is given and exchanged at the time and in detail to fit patients and their family’s needs.
They provide information in a way that patients and their families understand and avoid medical jargon.
Patients and their families are involved in the decision-making process involving their care.

Terminally ill people must be able to tell healthcare professionals and their families how they want to be cared for as their illness progresses, especially if they lose the mental capacity to express their wishes. Their preferences and needs should be in writing, known as advance care planning (or anticipatory care planning in Scotland).

Healthcare professionals must support patients and their families in creating an advanced care plan, which may include information such as:

How they want to be cared for.
The location where they want to be cared for.
Where they want to die.
Treatments they want and those they do not.
Their Will, i.e. what happens to their body after death and their funeral arrangements.

When it comes to advanced care planning, terminally ill people and their families will want to consider the following:

Advanced Statements

Refers to how someone records their future preferences and wishes.
They are not legally binding but can be used as guidelines for a person’s care.

Advance Decision to Refuse Treatment (ADRT)

These are also known as advanced decisions or living wills.
They are legal documents that detail the medical treatments a person wants to refuse in the future.
These are important if a person cannot make or communicate their own decisions.
The NHS has further information.

Lasting Power of Attorney (LPA)

These are also known as healthcare proxies, especially in America.
They are a legal way for someone to name a person or another trusted party to make decisions for them if they cannot do so themselves.

Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR)

Patients may want to consider whether CPR would be appropriate for them and the effects it may have on their futures. They can make a decision not to restart their hearts, which is known as DNACPR.

Last Will and Testament

It is not the same as a Living Will, as it details what a person wants to happen to their property, money and possessions after death.

Organ donation

People must decide whether they will donate their organs and tissues after their death.
People are automatically put on the organ donor register and must opt-out if they do not want to donate.
NHS Blood and Transplant has further information on organ donation.

Advanced care planning is ongoing, as plans may change due to patients’ circumstances and wishes.

For further information on advance care planning, see Macmillan Cancer Support.

Spiritual and Existential Care

Spirituality is present in every person’s life, and it means “seeking to connect and discover meaning, purpose and hope in those aspects of our experience that matter most to us” (Scottish Government). It does not mean someone is religious, although it can involve religion. It can mean different things to different people.

People with terminal illnesses and their families and friends often start to think about their lives differently and look more closely at their spiritual and existential needs. They may want to:

Look for meaning in their illnesses.
Find other ways to cope with their illnesses.
Search for life’s meaning and purpose.
Know how to deal with challenging life and death questions.
Improve relationships with themselves, others, society and even other things, such as nature.
Look for hope and a sense of belonging.
Find support to make sense of what is going on.
Start thinking about religion or other spiritual practices, including how this will affect funeral arrangements.

Spiritual and existential care is essential and intrinsic in palliative care, as it attends to a terminally ill person’s spiritual needs and helps them to find meaning in their lives. It is also closely connected to their physical, emotional and psychological needs. Further guidance on spiritual needs is on NHS Inform Spiritual Care and Cancer Research UK.

Many individuals have found solace and comfort through spiritual and existential care in palliative care. Here are some examples:

Dorothy House – have videos from a patient and a patient family member on their experience of spirituality.
Marie Curie – has some real-life examples of how patients’ and their families’ spiritual needs have been met.
The Methodist Church – Dr Peter Rookes shares his story about his wife Jean, her cancer journey and the spiritual support she received from her many friends of different faiths.
The University of Huddersfield – Senior Lecturer and Advanced Nurse Practitioner Melanie Rogers talks about how spirituality in healthcare plays a huge part in patients’ recovery.

Supporting Caregivers and Families

Family members, caregivers and even friends can access palliative care. They will provide care and support to the person to help them throughout their terminal illness, and they will also deal with the loss when the time comes to say goodbye. Therefore, they will also need support in this challenging and distressing time.

Some of the support available for family members and caregivers includes (this list is not exhaustive):

Carer’s assessments – to assess what caregivers need to help make their lives easier, e.g. adjustments in the home. Local authority adult social care services typically arrange assessments. The NHS has further information on this.
Palliative care services – also provide support for family members and caregivers when looking after a terminally ill person at home. The NHS has a search facility for palliative care services in England.
Counselling – provides family members and caregivers opportunities to talk to trained therapists one-on-one or in a group. It usually requires referral by a GP or other health professional, but they may also be able to refer themselves. They should check whether they can self-refer with their local NHS services.
Support lines – to help family members and caregivers cope. They can talk to trained professionals about their emotions or concerns and ask questions. Marie Curie has a free support line (0800 090 2309) and information about others.
Respite care – gives caregivers a break when providing end-of-life care at home. There are many types of respite care, and the NHS has further information.
Hospice care – is where a terminally ill person is close to the end of their life and moves into a hospice and is cared for there. Hospices will also provide holistic support for family members and caregivers. Hospice UK has further information.
Carer’s Allowance and Carer’s Credit – are types of financial support that caregivers may be eligible for when providing end-of-life care. Further information is on Carer’s Allowance and Carer’s Credit.
Help for young carers – applies where young people under 18 years old provide end-of-life care. The NHS has further details on support for young carers on their website.

Here are some examples of resources for family and caregiver support:

Family members and caregivers should remember they are not alone and ask for help and support whenever needed.

Dispelling Myths about Palliative Care

When seriously ill people and their families and caregivers hear the words palliative care, they may think it means giving up on treatments, going into a hospice or imminent death. However, this is definitely not the case, and there are a lot of myths out there that can confuse people. Let us debunk some of the myths surrounding palliative care.

Myth – patients do not need any further treatment for their illness if they need palliative care.
Fact – palliative care is used at any stage of a patient’s illness and alongside curative treatment.

Myth – palliative care means someone is at the end of their life.
Fact – palliative care does not mean a person is at the end of their life. In fact, some people have received palliative care for many years.

Myth – palliative care is only for those with cancer.
Fact – people with other terminal illnesses or progressive conditions, such as heart disease, lung disease, and dementia, can also have palliative care and benefit from it at various stages.

Myth – palliative care only helps with pain and other physical symptoms.
Fact – palliative care is a holistic approach that looks at the whole person and provides physical, emotional, psychological and spiritual support to enhance their quality of life.

Myth – palliative care only helps patients.
Fact – palliative care can help patient’s families, carers and friends, as it can be difficult and distressing for them too.

Myth – people only receive palliative care in hospitals or hospices.
Fact – people can have palliative care in many settings, such as their own homes, care homes and nursing homes.

Personal Stories of Palliative Care Success

Many personal stories and testimonials exist from patients and families who have benefitted from palliative care. Looking at what others have experienced can help people at the end of their lives and their families, carers and friends to realise they are not alone and understand more about palliative care.

Here are a few examples of personal stories of palliative care successes:

Paola has terminal cancer and talks about her experience of having palliative care – Paola’s story – Marie Curie.
Barbara talks about her experience of palliative care for cancer – West Yorkshire Health and Care Partnership.
Edith talks about her experience of living with heart failure and how palliative care has helped her become more active – British Heart Foundation.
Karen was diagnosed with bowel cancer and given months to live. She had counselling that helped her challenge her prognosis and get a second opinion that led to her living a ‘near normal life’ with cancer – The Institute of Cancer Research.
A husband talks about his wife’s terminal liver cancer diagnosis and how Sue Ryder Care helped improve her and the family’s quality of life – Sydenham Green Group Practice.
A Mum shares her experience of how the GOSH Palliative Care team supported their family when her son, Romeo, was born with a rare and complex heart condition – Great Ormond Street Hospital (GOSH).
A wife of a palliative care patient shares her experience of the end-of-life care her late husband received – North Tees and Hartlepool NHS Foundation Trust.

These stories highlight how palliative care can make a real difference in terminally ill people’s lives and help them adjust and continue doing some of the activities they love and find new ones they enjoy.

The message that terminally ill people and their families and caregivers should take from these stories is that there are always organisations and individuals that can provide help and support during this difficult and upsetting time. They should not struggle on their own and always seek support when needed.

Conclusion

Palliative care has a crucial role in caring for and supporting patients with terminal illnesses and their families, caregivers and friends. It treats people as a whole, recognises that they are much more than their illnesses and improves their quality of life and overall well-being during a challenging time.

People can have palliative care at any stage of a terminal diagnosis, but it is vital to remember that it does not mean a person’s death is imminent. People with terminal illnesses have gone on to live for many years after their diagnosis. Remember, it differs from end-of-life care but is a vital part of it as a terminally ill person approaches their last few weeks and days.

Terminally ill people and their families, caregivers and friends should consider palliative care from diagnosis to end of life, as it can provide individualised support and make a significant difference to people’s physical, emotional, psychological and spiritual well-being. While it can be harrowing to receive a terminal diagnosis, it is crucial to remember that there is still life to live, and palliative care helps with this tremendously.

Please use the comments section to share any experiences, questions or insights related to palliative care and to foster a compassionate and informative community.