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.
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 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.
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.”
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.
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