End of life with pulmonary fibrosis

Thinking about death and dying can be distressing, but by opening up to friends and family about your thoughts it can make preparations seem less overwhelming.

Progression of pulmonary fibrosis

Everybody is different but over time, your lung function is likely to drop and you may need oxygen to support your breathing. You may become a lot more fatigued and it will be harder to breathe as your pulmonary fibrosis progresses.

End-of-life signs

As you lose more lung function you will probably want to spend more time in bed. Towards the end, you may be sleepy or unconscious much of the time.

You may also lose interest in eating and drinking. Your breathing pattern may change and eventually, your skin may become pale and moist, and you will become very drowsy.

You may wish to consider end-of-life care. Many patients find this very beneficial as it provides help managing your physical symptoms as well as emotional support for you and your family. End-of-life care can be delivered in different places including in your home, in hospital, in a care home or nursing home, and in a hospice. Find out more about the stages of pulmonary fibrosis and pulmonary fibrosis life expectancy.

Talking about dying

"Talking about end of life care doesn’t make it happen"

Many people with pulmonary fibrosis find it helpful to express their wishes about what they want for their death. This allows you and your loved ones to make the most of the time you have left – and you can start to feel comfortable in the knowledge that you are prepared for when the time comes.

I have had conversations [about death] with both my son and my daughter. I'm quite an organised person so I like things done. Some people think it’s not for them, but I like to know that I've got everything sorted.

It can be hard to start conversations about death. But many families say that it’s a relief to know how their loved one would like to die and what they want to happen after their death. Talking about dying can help you and your family deal with death, both emotionally and practically.

“I've got letters written to my family of what I want and what I don't want.”

You can also get support through palliative care services or from a hospice. Or read some of the resources from Dying Matters.

Read Manisha and Claire's story about hospices

End-of-life care

If you choose to be cared for or die at home, you and your family may need to make some practical changes. You can have equipment, such as a ramp, a stairlift or oxygen installed in your home. The Pulmonary Fibrosis Trust offers grants and/or equipment.

You may also need specialist nursing care with toileting or eating. You can get advice from your palliative care team or hospice.

Making your wishes official

It can be very powerful for your family and friends to know that they have fulfilled your wishes. There are several documents where you can express what you want for your end-of-life care and after you die:

  • A lasting power of attorney is a legal document where you appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf once you can no longer make your own decisions.
  • An advanced care plan sets out your wishes about future care if you lose your mental capacity. You might want to include information about where you want to die and who you want with you.
  • An advanced decision or living will is a legally binding document which explains your wishes about future medical treatment, including whether you want to receive treatment that could potentially keep you alive.
  • Your will outlines your wishes about who should inherit your property, money and other assets. If you’ve not already made your will or you want to update your previous will, don’t put it off. Make sure your loved ones know where to find it.
  • A funeral plan can be very simple or quite detailed - from expressing your wishes about whether you want to be buried or cremated to the people, music, readings and flowers at your funeral.

The Ambulance Wish Foundation Charity

This unique and heart-warming charity was established in the UK in 2016 and is volunteer led and operated.

The Charity’s aim is to make the impossible, possible. The Ambulance Wish Foundation provides the means, resources, specialist transport and appropriate support to make memories and fulfil a dream/wish.
It’s usually the little things that mean the most to a person nearing the end of their life or living with a life debilitating illness.

So, if you fulfil any of the criteria listed below and who without the support of specialist vehicles and volunteers would be unable to travel or manage the trip to fulfil your wish otherwise, you can apply.

  • Terminally ill
  • Life debilitating illness
  • Elderly at end stage of life
  • Require assistance with the transportation of medical equipment e.g. oxygen, to fulfil your wish

For further information please visit www.ambulancewishfoundation.co.uk
If you are eligible and would like to apply for a wish e-mail info@ambulancewishfoundation.org.uk
Alternatively, you can download and complete a ‘Wish Application’ form via the website: https://ambulancewishfoundation.org.uk/make-a-wish/download-wish-form

Looking for more support?

We're here for you. Get in touch with our support line.

Information provided by Action for Pulmonary Fibrosis (APF) is not a substitute for professional medical advice. It’s intended as general information only. APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on actionpf.org.

Further information for carers:

Your essential caring guide (PDF)
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