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End of life with pulmonary fibrosis

Thinking about death and dying can be distressing. But having an idea of what to expect, planning, and opening up to friends and family, can help it seem less overwhelming.

This page discusses:

What may happen at the end of life for people with pulmonary fibrosis (PF).
What care to expect and all the support on offer.
How to plan for your care.

The information included here is not a guarantee of what will happen; end of life with pulmonary fibrosis looks different for everyone.

Wherever you are in your pulmonary fibrosis journey, Action for Pulmonary Fibrosis are here to support you.

Our Support Line team are available 9am to 5pm, Monday to Friday on 01223 785 725, or you can email us on supportline@actionpf.org.

What may happen at the end of life if I have PF?

Everybody’s experience of pulmonary fibrosis is different. However, in most people, over time, your lung function is likely to reduce, and you may need oxygen to support your breathing. You may become a lot more fatigued as it can take more energy to breathe as your PF progresses. You can read more about breathlessness management techniques here. As you lose more lung function, and use more energy to breathe, you’ll likely want to spend more time resting.

As your disease progresses further you may find you spend more time resting and napping, and do not wake feeling refreshed. This is a normal process. Towards the end of your life, you may be sleepy or unconscious much of the time. You may also lose interest in eating and drinking as your body naturally starts to shut down, this is also a normal part of the dying process. Your breathing pattern may change and your skin may become pale and moist as your circulation decreases. You will be in a deep state of relaxation as you go in and out of consciousness. The dying process is explained by Dr Kathryn Mannix in this short video Dying for Beginners.

There’s lots of care on offer to make sure you stay comfortable during this time, minimising any physical symptoms you might have. For example, medication can help manage any pain or help relax your breathing.

Find out more about the stages of PF and PF life expectancy.

What care can I expect?

There are two terms used to describe care provided for patients at end of life; palliative care and end of life care. It is important to be aware of the differences, as palliative care can be accessed much earlier in the PF journey and can help you to plan for end of life.

Palliative Care:

Palliative care focuses on enhancing quality of life for patients who are living with serious, progressive or life-limiting illnesses. It also includes support for families and caregivers. Palliative care looks at you holistically and focuses on what is important to you. It can include medical care, emotional support, and possibly access to other therapies like physiotherapy or complementary therapy. Palliative care can be accessed at any stage of illness.

It will focus on supporting you to manage your symptoms and empower you to make decisions about your future care.

Alongside care to keep you as physically well as possible from your healthcare team, palliative care could include:

Support to plan for end of life
Counselling for you and your family
Complementary therapies to help you feel as well as possible
Spiritual support from a chaplain (available for people of all faiths or none).

End of life care:

End of life care is the support and medical care provided during the time surrounding death. It focuses on symptom management and making the patient as comfortable as possible. It will likely include the multi-disciplinary approach mentioned above in palliative care, but there may be a stronger emphasis on pharmacological management of your symptoms (medication).

While a big part of end-of-life care keeps you comfortable physically at the end of your life, it goes much further than that.

End-of-life care can start in the final weeks or months of your life, but the planning for this care can begin years in advance. It can involve lots of different health professionals working with you so you can live as well as possible until you die, and die with dignity. They can also support your family, carers or other people who are important to you.

You can talk to your healthcare team to find out about both palliative and end-of-life services in your area. Your GP or ILD Specialist Nurse may be the best place to start.

Who does what?

Hospital pulmonary fibrosis team

You may know this team well, but you will probably find that you see less of them as you get less well and it gets harder to get up to hospital appointments. They can still advise you over the phone and/or advise your GP or other community-based healthcare professionals.

Your GP surgery will remain responsible for all your medication and with providing medical oversight to your care when you’re at home. They should be able to get someone to visit on the same day or next day if that’s what is needed.

Community specialist palliative care teams

These teams are specialists in palliative care and are likely to made up of a mixture of specialist nurses and doctors and possibly other healthcare professionals like physiotherapists or psychologists. These teams may be based in a GP practice or your local hospice, but are not allied to hospices in all areas.

District or community nursing team

These are nurses who are based in the community who can provide various kinds of nursing care in people’s homes (for example wound care, some diabetes management, giving extra injectable medication, organising some kinds of care and equipment).

Hospice

These are usually independent charities and often have slightly different services, depending on their local area. These services can include a community palliative care team, a ward or ‘Living Well’ services. It is worth finding out what services your local hospice provides.

Planning for end of life

Many people with PF find it helpful to consider, talk through and record their preferences for care at the end of their life. This can be done at any stage of the PF journey, and it is recommended that people with a terminal diagnosis consider this early on.

When thinking about end of life care, it is important to always be aware that flexibility is important. Things might not happen the way you expect, and you may not have as much control over your situation as you would like. Whilst this can be a source of anxiety, having a contingency plan and being aware of the options can help make sure that, even if things change, you still receive care in the way that is best for you.

You may want to think through and record your wishes on what is important to you now and what you think might be important to you at the end of your life. It is worth considering whether you have a preference as to where you would like to be cared for as you are dying but it is important to understand that, depending on the circumstances at the time, it might not be possible for you to choose where you die.

Dying at home

Many people do die at home, but it does take some planning and support to facilitate this. For someone to die at home, they will almost certainly need some or all of:

Equipment - for example a hospital bed, a commode.
Package of care – this may include carers coming in to help with washing, dressing, using the toilet.
Availability of injectable medicines, which can be given by District Nurses.
Advance care planning documentation confirming preferences for care, including a decision on whether or not cardiopulmonary resuscitation (CPR) should be attempted.

It is not usually possible to have round-the-clock nursing care at home so, if someone has care needs over a 24-hour period, then they need to be in a care home or possibly a hospice.

Equipment and care are usually free when someone is dying, as with other NHS care. It can be accessed via a variety of people - district nurses, community palliative care teams, GPs and community Occupational Therapy services. You can ask your healthcare team who you should be contacting to access this support in your area.

Dying in a hospice

Most hospices in the UK are small independent organisations with a limited number of inpatient beds. They have specialist nurses and doctors working in their wards and priority for admission is given to patients who need that specialist support because of the complexity of their needs.

Refusing treatment

An Advance Decision to Refuse Treatment (ADRT) is a legal document that allows you to refuse specific medical treatment in the future. Your palliative care team can help you with this. Knowing you’ll get the care you want can help you feel prepared and in control. With decisions made, you and your loved ones can make the most of the time you have left.

Planning and recording decisions are also important in case there’s a time when you’re unable to make decisions yourself. It can make things easier for your loved ones when you’re nearing the end of life too. They’ll know they’re fulfilling your wishes and won’t have the stress of making difficult decisions at an already difficult time.

A good place to start with planning is to talk it through with your loved ones (see below) and healthcare team. You may then want to consider formally recording your decisions. Even after you make and record your decisions, you are still allowed to change your mind later on.

Making your wishes official

Reaching out to your local community palliative care team is a great place to start this process, as they have the expertise to help you navigate end of life planning. If there is no community palliative care team in your area, you can contact your GP. There are several documents you can use to express what you want for your end-of-life care, and after you die.

Future Care Plan (also known as an Advance Care Plan or Advance Statement)

This sets out your wishes about future care if you lose your mental capacity. It can cover everything from how you want your religious or spiritual beliefs to be reflected in your care, to where you’d like to be cared for (at home, for example).

This type of plan isn’t legally binding, but any healthcare professionals making decisions about your care will take it into account.

An Advance Decision or Living Will

This 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.

Lasting Power of Attorney

This is a legal document that appoints one or more people to make decisions on your behalf if you can no longer make your own decisions. This can apply to decisions around health and finances.

A Will

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.

Funeral plan

A funeral plan outlines what you want to happen for your funeral (including whether you want to choose not to have one). Not everyone wants to make a funeral plan, and that is okay. 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.

Remember to review your plans regularly and keep them up to date as your situation and wishes change.

You might also want to think about other practical things including:

Digital legacy: who has your passwords for key accounts?
Key documents: who knows where these are?
Pet care: do you have a plan for continuing care for your pets? Does someone know where everything is?

Talking about dying

Having conversations about end-of-life planning and death with your family and loved ones can be difficult. But it’s often beneficial for both you and them.

Many families say 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. You might want to talk about a number of things, including:

Feelings about death
Worries
Fears
Your wishes for your future care
Your funeral
Things you’d like to give to people
What to expect
Who can support me? Are there any contact numbers I can ring if I’m worried?

Remember, you don’t have to talk about everything at once. If you’re struggling to talk about dying with your family, you can write down your thoughts and feelings to share with them later.

The NHS website has good practical advice about starting conversations about dying, if you find this difficult.

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.

Our Support Line is here to help

Additional Resources

Marie Curie

Marie Curie’s website has advice and information on all aspects of end of life planning and care.

The Farewell Guide (Legacy of Lives)

The Farewell Guide is a free online resource to help with funeral planning and understanding funeral wishes.

Dying Matters

Hospice UK’s Dying Matters campaign aims to create an open culture where we’re comfortable talking about death, dying and grief. Their website has a range of resources to help you navigate hospice and end of life care.

Dr Kathryn Mannix, Dying for Beginngers video

In this video, Dr Kathryn Mannix explains the natural, recognisable phases of dying.

Our website and resources provide general information only. We cannot provide medical advice, treatment or prescriptions, nor can we assess/decide what services or clinicians you should be referred to. Support with these matters will need to be provided by your existing healthcare professional teams.

APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on our website or in our resources.

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