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Palliative care

5 min read

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 pulmonary fibrosis 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 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

نصيحة سريعة

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 illnesses²

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 pulmonary fibrosis patients and their families now, and in the future. For progressive pulmonary fibrosis conditions, management changes over time. 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 pulmonary fibrosis 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 pulmonary fibrosis 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 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 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.

End of life care

Specialist care is needed towards the end of life. Support is also available for carers

نصيحة سريعة

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

الأفكار الرئيسية

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

عرض المراجع إخفاء المراجع

1.
1. Kreuter M, Bendstrup E, Russell AM, et al. Palliative care in interstitial lung disease: living well. Lancet Respir Med. 2017;5(12):968–980.
2.
1. Understanding palliative care. Pulmonary Fibrosis News. Available at: https://pulmonaryfibrosisnews.com/2017/12/05/pulmonary-fibrosis-understa.... [Accessed February 2019]
3.
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 February 2019]

Patient support groups

Support groups are a valuable resource to help you through your journey.

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