Palliative Care

• 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 the hospital or in a care home

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

It focuses on providing relief from symptoms, as well as the physical and mental stress of living with a serious illness. Families and caregivers of people with pulmonary fibrosis can also be involved and be offered emotional, physical and spiritual support.

Modern palliative care is not only for those approaching the end of their life, but also for those in the earlier stages of their illnesses. Palliative care should begin upon diagnosis of pulmonary fibrosis and continue alongside other treatments. For example, those who received a lung transplant can receive palliative care in the hospital while recovering from the operation, so that they can have an improved quality of life.

What does palliative care involve?

Palliative care is used to improve physical well-being and mental health. Treatment can involve medications, complementary therapies and any other support that the healthcare team recommends.

Palliative care teams are made up of multidisciplinary healthcare professionals, which may include doctors, nurses, social workers and home health aides. The palliative care team works together with the healthcare team to provide an extra layer of support. They work with both patients and caregivers to consider their unique needs. The treatment plan is based on the physical, emotional, social and cultural needs of both patients and caregivers.

Palliative care is important for people with pulmonary fibrosis and their families now, and in the future. Pulmonary fibrosis management changes over time as the disease progresses. So, managing symptoms (such as a cough) becomes very important. Palliative care helps people with pulmonary fibrosis and their caregivers get access to the help they need to improve their lives in both the short and long term.

Talking openly about pulmonary fibrosis can help those living with the disease and their caregivers understand how it will affect their life. For those with pulmonary fibrosis, 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:

• 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 a support group can improve mental well-being
• Social support: changes to 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 someone with pulmonary fibrosis understand what is happening to them
• Planning for the future: preparing or updating an advance directive, as well as choosing a surrogate decision-maker, can give those with pulmonary fibrosis control over their disease
• Access to resources: referrals to resources such as physical therapy can expand the healthcare team to include more beneficial services

Through supporting every aspect of their health, palliative care can help people with pulmonary fibrosis, caregivers and their families achieve the best quality of life possible. The benefits of palliative care include:

• 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 caregivers, including spiritual support and access to counselling

How to prepare for conversations about palliative care

Some tips to think about before speaking with the healthcare team:

• Think about, and maybe write down some questions that both of 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 through all of the questions
• Let your healthcare team know about any spiritual or cultural needs that you and your family may have
• Be frank and honest about any feelings or worries that you both may have
• If you do not understand something your healthcare team has said, do not be afraid to ask for an explanation

Where can people receive palliative care?

Patients and caregivers can choose to receive palliative care in different locations. For example, palliative care can be provided:

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

Where palliative care takes place is a personal decision that should be discussed together, including your healthcare team.

Caregiver 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
• Caregiver advice, legal documents and support for managing practical challenges (e.g., 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 healthcare team should be your first point of contact to discuss palliative care.