Woman comforting male patient in wheelchair in a park

Palliative care

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An operation to replace a patient’s diseased lungs with lungs from a donor
View in glossary

The worsening of a disease/condition over time

View in glossary

A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

View in glossary

A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

View in glossary

A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

View in glossary

A physician specialising in the management of diseases of the digestive system

View in glossary

An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

View in glossary

Palliative care (often referred to as supportive care) is a type of health care for patients and their families facing life-limiting illnesses.

 

It focuses on providing patients with relief from both symptoms, as well as the physical and mental stress of living with a serious illness. Families and carers of people with IPF can also be involved and be offered emotional, physical and spiritual support.1,2

 

Modern palliative care is not only for patients approaching the end of their life, but also for those in the earlier stages of life-limiting illnesses. Palliative care should begin upon IPF diagnosis and continue alongside other treatments. For instance, if a patient has a lung transplant, they can receive palliative care in hospital while recovering from the operation, so that they can have an improved quality of life.2 

Quick Tip
An operation to replace a patient’s diseased lungs with lungs from a donor
View in glossary

The worsening of a disease/condition over time

View in glossary

A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

View in glossary

A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

View in glossary

A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

View in glossary

A physician specialising in the management of diseases of the digestive system

View in glossary

An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

View in glossary

Palliative care is not only for patients approaching the end of their life. It plays an important role, even in the earlier stages of a life-limiting illnesses, whether or not the disease can be cured2

An operation to replace a patient’s diseased lungs with lungs from a donor
View in glossary

The worsening of a disease/condition over time

View in glossary

A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

View in glossary

A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

View in glossary

A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

View in glossary

A physician specialising in the management of diseases of the digestive system

View in glossary

An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

View in glossary

What does palliative care involve?


Palliative care is a method used to improve both physical and mental wellbeing. Treatment can involve medicines, complementary therapies and any other support that the treatment team recommends.

 

Palliative care teams are made up of multidisciplinary health care professionals, which may include doctors, nurses, social workers, and home health aids. The palliative care team works together with your treatment team to provide an extra layer of support. They are always careful to consider the unique needs of patients and their carers. Treatment is tailored to consider physical, emotional, social and cultural needs of both patients and those caring for them.3 

 

Palliative care is important for IPF patients and their families now, and in the future. IPF management changes over time as the disease progresses. To begin with the disease maybe be managed with IPF-directed therapies. As the disease progresses, managing symptoms (such as a cough) becomes very important. Palliative care helps patients and their families get access to the help they need to improve their lives in both the short and long-term. 

 

 

Talking openly about IPF and its treatment can help patients understand their disease and how it will affect their life. For patients, palliative care focuses on improving quality of life.  Listed below are some of the ways palliative care could help many different areas of a patient's life: 2

  • Physical symptoms: pain, fatigue nausea, shortness of breath, constipation and insomnia can reduce a patient's quality of life. Managing these and other symptoms can improve physical well-being
  • Emotional support: living with a serious illness can be a source of anxiety, frustration, grief and depression. Finding peace of mind can help make the challenges of IPF and its treatment easier to handle. Working with a psychiatrist or participating in support group can improve mental well-being
  • Social support: changes to a patient's relationships with their family, friends and colleagues can be worrying. Offering support and helping to start conversations with family and friends can relieve some of the isolation, helping those important to the patient understand what is happening to them
  • Planning for the future: help to prepare or update a patient advance directive, as well as choosing a surrogate decision-maker, can give a patient of control over their disease
  • Access to resources: referrals to resources such as physical therapy can expand a patient's treatment team to include the resources they need

Through supporting every aspect of their health, palliative care helps patients, carers and their families achieve the best quality of life possible. The benefits of palliative care include:4

  • Relief from pain
  • Relief from stress
  • Creation of a support system to help patients live as comfortably as possible
  • Creation of a support system for families and carers, including spiritual support and access to counselling. 

How to prepare for conversations about palliative care

Some tips to think about before talking to your healthcare team:

  • Think about, and maybe write down some questions you would like to talk about
  • It may be useful to take a notepad and pen to write down information you may receive 
  • Allow plenty of time to talk though all of your questions 
  • Let your treatment team know about any spiritual or cultural needs that you and your family may have
  • Be frank and honest about any feelings or worries you may have 
  • If you do not understand something your treatment team has said, do not be afraid to ask for an expatiation

Where can people receive palliative care?2

 

Your loved one can choose to receive palliative care in different locations. For example, palliative care can be provided:

  • At home
  • In a care home
  • In hospital
  • In a hospice

Where palliative care takes place is a personal decision which should be discussed with your loved one, any other carers and treatment team.

 

Carer support during palliative care

 

Not every experience of living with IPF is the same. This means that those involved in providing care for loved ones living with IPF have unique needs of their own. Family members and friends of those with IPF should seek tailored support, to meet their physical, emotional and spiritual needs. These services may include:

  • Referrals to local support groups and counselling services
  • Advice and training on the use of supplies and equipment
  • Carer advice, legal documents and support for managing practical challenges (i.e. finances, insurance matters etc)
  • Access to respite care, if you need to take a break from your daily tasks

The available palliative care support may differ depending on the area you are in. Your loved one’s treatment team should be your first point of contact to discuss palliative care.

Elderly couple sitting together on a bench in a park
End of life care
Specialist care is needed towards the end of life. Support is also available for carers
Quick Tip
An operation to replace a patient’s diseased lungs with lungs from a donor
View in glossary

The worsening of a disease/condition over time

View in glossary

A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

View in glossary

A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

View in glossary

A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

View in glossary

A physician specialising in the management of diseases of the digestive system

View in glossary

An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

View in glossary

Try to begin conversations about supportive/palliative care with your loved one and their treatment team as early as possible. Putting plans in place can help ease your mind and allow you to focus on spending quality time doing things you enjoy with your loved one

Key Takeaways

  • Palliative care aims to relieve symptoms to allow people to live more comfortably

  • As well as physical relief, palliative care also provides emotional support

  • Palliative care can be given at home, in hospital or in a care home

Show references Hide references
  1. 1.

    Krau SD., The Difference Between Palliative Care and End of Life Care: More than Semantics. Nurs Clin North Am. 2016;51: ix-x. 

  2. 2.

    Kreuter M., et al. Palliative care in interstitial lung disease: living well. Lancet Respir Med. 2017; 5:968-980 

  3. 3.

    pulmonaryfibrosisnews.com. Understanding palliative care. Available from: https://pulmonaryfibrosisnews.com/2017/12/05/pulmonary-fibrosis-understa... [Accessed November 2018] 

  4. 4.

    MarieCurie.org.uk: What are palliative care and end of life care? Available from: https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/pa... [Accessed May 2018] 

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Palliative care or symptomatic care is really treatment that is targeted at improving quality of life and reducing symptoms

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