What is palliative care?

When you or a loved one gets a serious illness, it can be overwhelming trying to figure out all the next steps. Seeking palliative care early on and throughout your journey can help make things more manageable for both you and your family. The NHS provides palliative care to patients of all ages, including children and young people.

Palliative care is specialised medical care that focuses on providing relief from the symptoms, pain and stress of a serious illness whatever the diagnosis. When people think of hospice or palliative care, they often think about end-of-life care. While this is one aspect of palliative care, it is not the only focus. The goal is to improve the quality of life for both the patient and the family.

What’s the difference between palliative care and end-of-life care?

Palliative care is medical care that’s focused on providing relief from the symptoms, pain and stress of serious illness. The goal is to improve the quality of life for both the patient and the family. It’s provided by a team of doctors, nurses and other specialists who work together with the patient’s other doctors to provide an extra layer of support.

End-of-life care is a type of palliative care that’s provided in the last days to a dying person when it’s clear that the patient isn’t going to get better. The focus is on managing symptoms and providing comfort. It is typically given when it’s no longer possible to cure the underlying condition, when treatment choices are only focused on maintaining comfort or when curative treatment options have been exhausted and there’s no longer any real hope for recovery.

Palliative care can be provided at any stage of a serious illness, even if the patient is still getting treatment aimed at curing their condition. It can be provided along with curative treatment or it may be the only kind of care being given if a cure isn’t possible.

Palliative care can be delivered in many different settings, including hospitals, nursing homes, clinics, patients’ homes and even hospices. End-of-life care is usually given in hospice facilities or in patients’ homes.

It’s important to remember that palliative care isn’t just for people who are close to death. It can be helpful at any stage of a serious illness and it can be provided alongside curative treatment. In England, the term ‘end-of-life care’ refers to the last year of life.

What does palliative care involve?

Palliative care is provided by a team of doctors, nurses, social workers and counsellors who work together to provide comprehensive personalised care. The team will get to know the patient and the family so that they can provide care that is tailored to meet their specific needs. Palliative care team members listen to your concerns and preferences and will explain all your options in detail so that you can make informed decisions about your care.

Palliative care focuses on providing relief from the symptoms and stress of a life-limiting illness or a terminal illness such as cancer, heart disease, lung disease and kidney disease. The goal is to improve the quality of life for both the patient and the family with a holistic approach. Palliative care teams aim to provide comprehensive support and can offer a variety of services depending on the needs of the patient and family. Some of the services that may be offered include:

• Symptom management: Symptom management is a key component of palliative care. The goal of symptom management is to relieve suffering and improve quality of life. Common symptoms that are managed in palliative care include pain, shortness of breath, fatigue, constipation, nausea and anxiety. There are many different ways to manage distressing symptoms and the approach will be tailored to each individual patient. In some cases, palliative medicine may be used to relieve symptoms. Other approaches may include massage, relaxation techniques, therapies or changes in diet or activity level
• Emotional Support and spiritual support: Palliative care providers understand that dealing with a serious illness can be very difficult for both patients and their families. Addressing suffering involves taking care of issues beyond physical symptoms. Emotional support includes listening to patients, providing empathy and support and helping them express their feelings. It also includes helping patients and families understand the illness, make decisions about treatment, and cope with the changes that come with a serious illness.
  Spiritual support helps patients deal with their spiritual needs. This can include talking about values, beliefs and concerns. It can also involve prayer or meditation. Spiritual support can be provided by chaplains, clergy or other trained providers. Some hospitals have full-time chaplains. Many community faith organisations also have programs to provide spiritual support to people with serious illnesses. Marie Curie is the UK’s leading end-of-life charity that can help with practical information and support on all aspects of life with a terminal illness, dying and bereavement
• Practical Assistance: Palliative care teams can also offer practical assistance with things like financial planning, insurance paperwork, power of attorney and advance directives. When you are approaching the end of your life, it is common to have many practical needs and questions. Who will manage your finances? Do I qualify for Disability Living Allowance? What should you do about your will? How will you cope with pain? Palliative care can offer practical assistance with all of these issues and more
• Bereavement Counseling: After a patient passes away, palliative care teams can provide counselling services to help family members, carers and loved ones deal with their grief. Bereavement counselling is an important part of palliative care. Counsellors can provide support and guidance through the grieving process. They can also help families to identify and deal with any complicated grief reactions. Bereavement counselling can be an important part of the healing process for families who are coping with a loved one’s serious illness
• Advance care planning. When someone is diagnosed with a terminal illness, they and their family will face a lot of tough decisions. What kind of treatment should they have? Where should they receive care? How should they plan for the future? One of the most important things you can do is advance care planning. This means thinking about and documenting your preferences for medical treatment and end-of-life care. It can be a difficult process, but it can be very helpful to have these conversations with your loved ones and those involved in the person’s care ahead of time. Advance care planning is an important part of palliative care, it can help make sure that your wishes are respected and honoured at the end of your life

Who will be involved in your palliative care?

The healthcare professionals involved in your palliative care will depend on the setting you are in. If you are in a specialist palliative care unit, you will be cared for by a team of doctors, nurses and other health professionals who have specialist training in palliative care.

If you are in a hospice, you will be cared for by a team of specialist palliative care staff. If you are in a care home or nursing home, your GP, district nurse and/or specialist palliative care nurse will coordinate your care with the staff at the care home or nursing home. If you are at home, your GP, district nurse and/or specialist palliative care nurse will coordinate your care with any other health professionals who are visiting you at home, such as community nurses, physiotherapists, occupational therapists and social care professionals. You can be referred to specialist palliative care services at any stage of your illness.

Specialist referral should also always be considered when there is doubt about the diagnosis or prognosis when high-quality symptom control cannot be achieved, when patients or families request a referral or when patients request aggressive treatment but there is little chance that it would be successful.

Common misconceptions about palliative care include that it is only for people who are close to the end of their life or that it is synonymous with hospice care. In reality, palliative care can be beneficial for people of any age and at any stage of an incurable illness, even those undergoing treatment for curable illnesses. Hospice care is a subset of palliative care that focuses on providing comfort for people who are terminally ill and are no longer seeking active treatment to cure their disease.

If you or someone you love has been diagnosed with a serious illness, know that you don’t have to go through it alone. There is a whole team of people ready to help manage symptoms and provide support.

Sources

• Palliative care – Macmillan
• Hospice care – NIH
• End-of-life care – NHS