The worsening of a disease/condition over time
A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf
Refers to the lungs
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
A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15
Therapy that provides relief from symptoms to help patients live more comfortably with their disease13
Administration of oxygen as a medical intervention11
A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11
Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF
A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12
A specialist who helps someone recover or live with their symptoms more easily
A machine that removes other gases from the air to provide oxygen for oxygen therapy11
An education and exercise program designed to improve the quality of life for people with lung conditions16
A physician specialised in lung problems (also known as a respirologist)
A product that gives protection against a specific infection
A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11
A breathing technique to help control breathlessness and reduce anxiety17
A disease that affects only a small percentage of the population
Something that is associated with an increased risk of disease or infection
A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions
Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing
A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease
A disease or condition that occurs at the same time as another disease or condition
A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6
A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7
A type of chronic disease that typically worsens over time and is characterized by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5
Refers to the heart, and blood vessels
A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2
Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place
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
Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs
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
A lung condition where the air sacs within the lungs (alveoli) become damaged5
Extreme weariness resulting from exertion or illness
Of unknown cause
Rapid and uncontrolled breathing
A disease where there is progressive scarring or thickening of the lungs without a known cause4
The surgical removal of cells or tissue samples from the lung for examination by a pathologist10
The lung tissue becomes thickened and stiff
A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4
A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth
Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4
A symptom where the ends of the fingers become wider and rounder8
A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9
A physician specializing in the management of diseases of the digestive system
An event characterized by sudden, severe worsening of symptoms or an increase in disease severity1
Supportive (palliative) care can provide support for you and help your loved one live with a serious illness comfortably
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 your loved one with relief from both symptoms, as well as the physical and mental stress of living with a serious illness. It means that you can be involved and be offered emotional, physical and spiritual support.1,2
What does palliative care involve?
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 loved one’s treatment team to provide an extra layer of support. They are always careful to consider the unique needs of both you and your loved one so treatments are tailored to consider your physical, emotional, social and cultural needs.1,2
In pulmonary fibrosis, palliative care is especially important. For progressive pulmonary fibrosis conditions, management changes over time. As the condition progresses, managing symptoms becomes very important. Palliative care can give you access to what you need to help with this and aims to improve your life in both the short and long term.
Where can people receive palliative care? 3
Your loved one can choose to receive palliative care in different locations. For example, this 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.
Support for you
Not every experience of living with pulmonary fibrosis is the same. This means that those involved in providing care for loved ones living with pulmonary fibrosis have unique needs of their own. Family members and friends of those with pulmonary fibrosis should seek tailored support, to meet their physical, emotional and spiritual needs. These services may include:
- Referrals to local support groups and counseling 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.
Palliative care should begin upon your loved one receiving a diagnosis and continue alongside other treatments. This way, you, your loved one and family members have a support system in place right from the beginning.
The worsening of a disease/condition over time
A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf
Refers to the lungs
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
A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15
Therapy that provides relief from symptoms to help patients live more comfortably with their disease13
Administration of oxygen as a medical intervention11
A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11
Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF
A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12
A specialist who helps someone recover or live with their symptoms more easily
A machine that removes other gases from the air to provide oxygen for oxygen therapy11
An education and exercise program designed to improve the quality of life for people with lung conditions16
A physician specialised in lung problems (also known as a respirologist)
A product that gives protection against a specific infection
A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11
A breathing technique to help control breathlessness and reduce anxiety17
A disease that affects only a small percentage of the population
Something that is associated with an increased risk of disease or infection
A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions
Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing
A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease
A disease or condition that occurs at the same time as another disease or condition
A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6
A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7
A type of chronic disease that typically worsens over time and is characterized by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5
Refers to the heart, and blood vessels
A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2
Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place
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
Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs
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
A lung condition where the air sacs within the lungs (alveoli) become damaged5
Extreme weariness resulting from exertion or illness
Of unknown cause
Rapid and uncontrolled breathing
A disease where there is progressive scarring or thickening of the lungs without a known cause4
The surgical removal of cells or tissue samples from the lung for examination by a pathologist10
The lung tissue becomes thickened and stiff
A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4
A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth
Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4
A symptom where the ends of the fingers become wider and rounder8
A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9
A physician specializing in the management of diseases of the digestive system
An event characterized by sudden, severe worsening of symptoms or an increase in disease severity1
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
Show references
Hide references
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1.
Pulmonary Fibrosis News. Understanding palliative care. Available at: https://pulmonaryfibrosisnews.com/2017/12/05/pulmonary-fibrosis-understa.... [Accessed April 2019].
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2.
MarieCurie.org.uk: What are palliative care and end of life care? Available at: https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/pa.... [Accessed April 2019].
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3.
NHS. Where you can be cared for. Available at: https://www.nhs.uk/conditions/end-of-life-care/where-you-can-receive-care/. [Accessed April 2019].
