Preparing for the End of Life: What Matters Most to You?

Last reviewed: 9 October 2026

Most people living with aspergillosis are concentrating on living their lives, managing treatment and staying as well as possible. But serious or long-term illness can also prompt questions about the future, including what we would want if our health deteriorated.

For some people, these thoughts arise long before the end of life. Others prefer not to think about them until circumstances change. Both responses are understandable.

Talking about death does not mean giving up on life. It can be a way of making sure that, whatever happens, the people caring for us understand what matters most.

What does a good death mean?

The expression “a good death” can sound strange. Death is something many people fear, and the experience of dying is not entirely within anyone’s control.

Nevertheless, people often have clear ideas about what would make the end of their life more bearable, dignified or peaceful.

Some hope to remain at home. Others would feel safer in hospital or a hospice, with professional support close by. Some want family around them; others value privacy and quiet.

Common priorities include:

• relief from pain, breathlessness and other distressing symptoms;
• being treated with dignity and respect;
• having personal wishes understood;
• being able to spend time with important people;
• receiving emotional, cultural or spiritual support where wanted;
• avoiding treatments that would offer little benefit or cause unwanted burdens.

These are possibilities, not a checklist. A peaceful death does not require a particular setting, a particular belief, or a perfect set of family circumstances.

It is also important not to suggest that someone has failed if their death is difficult or does not happen as planned. Serious illness can be unpredictable, and even excellent care cannot guarantee a particular experience.

Understanding our fears

When people talk about being frightened of death, they may be describing several different fears.

Some fear the unknown. Others worry about pain, severe breathlessness, loss of independence, confusion, being alone, or leaving loved ones behind.

For people with advanced respiratory disease, the fear of struggling to breathe can be especially powerful.

These concerns deserve to be taken seriously. They should not be dismissed as simply anxiety or something that everyone must accept.

Healthcare professionals can often offer practical explanations about what symptoms might occur and how they would be managed. Understanding the options may reduce uncertainty, even when it cannot remove every fear.

Some people find comfort in religious or spiritual beliefs. Others draw strength from relationships, nature, music, personal memories or simply knowing that someone will listen. No particular belief is necessary to have a meaningful conversation about dying.

Thinking about what matters most

A useful starting point is not necessarily to ask, “How do I want to die?”

It may be easier to ask, “What makes life worth living for me, and what would I want people to understand if I became seriously unwell?”

Questions worth considering include:

• What activities, relationships or experiences matter most to me?
• What worries me most about becoming more unwell?
• What would help me feel safe and comfortable?
• Who would I want involved in discussions about my care?
• Are there treatments or situations I would particularly want to discuss?
• Would I prefer to receive care at home, in hospital or elsewhere, if circumstances allowed?
• Are there religious, cultural or personal wishes that staff should know about?

There is no requirement to answer everything. Some people find it helpful to write down a few thoughts and return to them later.

Preferences may change as health, circumstances and understanding change. Planning ahead is an ongoing conversation, not necessarily a single decision.

Planning ahead for future care

Advance care planning is the process of discussing and recording wishes and priorities for future care, particularly in case a person becomes unable to make or communicate decisions.

Several different arrangements are available in England and Wales. They are related, but they are not interchangeable.

Advance statement

An advance statement records personal wishes, values and preferences. It might describe where you would prefer to receive care, what makes you comfortable, or who you would like involved.

An advance statement is not legally binding, but it should be taken into account when decisions are made about your care.

Advance decision to refuse treatment (ADRT)

An advance decision allows an adult with the necessary mental capacity to refuse specified medical treatments in defined future circumstances.

In England and Wales, an advance decision can be legally binding if it is valid and applicable to the situation.

Additional formal requirements apply when refusing life-sustaining treatment. These include putting the decision in writing, signing it, having it witnessed and clearly stating that it applies even if life is at risk.

This is an important decision to discuss with an appropriately qualified healthcare professional, particularly if you are considering treatments such as ventilation or resuscitation.

Lasting power of attorney for health and welfare

A health and welfare lasting power of attorney allows you to appoint someone you trust to make certain health and care decisions on your behalf if you lose the capacity to make those decisions yourself.

It must be registered before it can be used. Decisions about life-sustaining treatment require specific authority within the document.

Legal arrangements differ in Scotland and Northern Ireland, so patients living there should seek guidance relevant to their jurisdiction.

DNACPR decisions

DNACPR means Do Not Attempt Cardiopulmonary Resuscitation. It concerns whether CPR should be attempted if the heart or breathing stops.

A DNACPR decision does not mean that other treatment or care should stop. It does not automatically prevent antibiotics, oxygen, symptom relief, hospital admission or other appropriate treatment.

Decisions about CPR should involve appropriate discussion with the patient wherever possible. They should reflect clinical circumstances and the person’s wishes and rights.

If you are worried about a DNACPR decision or do not understand why one has been proposed, ask your healthcare team to explain it.

Remember: while you have the capacity to make a particular decision, your own informed choices remain central. Advance planning becomes especially important if you later cannot make or communicate those choices.

Talking with family and healthcare professionals

Conversations about dying are not always easy. Families sometimes avoid the subject because they do not want to upset one another.

Yet uncertainty can also be distressing. Loved ones may worry about making the wrong decision if they do not know what the patient would have wanted.

You do not have to begin with a formal discussion about end-of-life care. You might simply say:

“I’ve been thinking about what would matter to me if I became much more unwell. I’d like us to talk about it sometime.”

Or:

“I’m not expecting anything to happen soon, but I would feel better knowing you understood my wishes.”

Not everyone will feel ready to talk. It may help to choose a quiet time, keep the conversation short and return to it later.

A GP, specialist nurse, respiratory consultant or palliative care professional can help explain the medical options and support conversations with family members.

Where wishes have been formally recorded, ask how they can be made available to the relevant healthcare services, including out-of-hours teams and emergency care.

Comfort, dignity and symptom control

Many people worry that dying from lung disease must involve severe breathlessness or distress.

Advanced respiratory illness can certainly cause difficult symptoms, but there are treatments and supportive approaches that may help.

Depending on the person’s needs, care may include:

• medication and other measures to relieve breathlessness or pain;
• treatment of anxiety or agitation;
• comfortable positioning and appropriate nursing care;
• support with troublesome secretions, cough or other symptoms;
• emotional, psychological or spiritual support;
• specialist palliative care advice when symptoms are complex.

Some symptoms can be difficult to control completely, but patients and families should know that relief of suffering is an important part of medical care.

Palliative care is not restricted to the final stage of life. It can be provided alongside treatment for aspergillosis and other conditions, sometimes over an extended period.

Read our related article: Living Well with Aspergillosis: Understanding Palliative and Supportive Care.

Practical preparations

Some people find reassurance in organising practical matters while they are well enough to do so.

These might include:

• making or reviewing a will;
• recording important contacts and information about finances or household responsibilities;
• considering who could manage practical affairs if needed;
• writing down funeral or memorial preferences;
• making sure trusted people know where important documents are kept;
• recording personal messages or memories, if that feels meaningful.

These tasks are optional. They do not have to be completed all at once, and they are not a measure of how well someone has prepared.

Practical arrangements such as wills and powers of attorney may require independent legal advice.

Support for carers and families

Partners, relatives and friends may be deeply involved in caring for someone with advanced illness. They may help with medication, appointments, personal care, mobility, emotional support and communication with professionals.

They may also be frightened, exhausted or uncertain about what to do.

Carers can help by listening to the patient’s wishes, supporting conversations and ensuring that healthcare professionals know about relevant plans. But they should not be expected to carry the entire responsibility for complex medical decisions.

It is important to remember that a family member does not automatically have legal authority to make healthcare decisions simply because they are the person’s next of kin.

Carers also need support themselves. This may include:

• clear information about the person’s condition and care;
• advice about what to do if symptoms worsen;
• access to community nursing or specialist services where appropriate;
• practical assistance and respite care;
• emotional support before and after a bereavement.

There is no single correct way to be a carer. Being present, listening and asking for help when needed can be as important as providing practical care.

Living fully while planning ahead

Thinking about death need not mean spending every day anticipating it.

For many people, making some decisions in advance allows them to return their attention to the present: relationships, ordinary routines, enjoyable activities and the things that still give life meaning.

Some people want detailed plans. Others prefer to make only a few essential decisions. Both approaches can be reasonable.

The purpose is not to achieve a perfect death. It is to give people the greatest possible opportunity to be heard, respected and cared for according to what matters to them.

Further information and support

• NHS: Planning ahead for end-of-life care
• NHS: Advance statements
• NHS: Advance decisions to refuse treatment
• NHS: Understanding DNACPR decisions
• Marie Curie: Support for people with terminal illness and their families
• Compassion in Dying: Planning ahead and understanding your rights
• Aspergillosis.org: Trusted Online Resources for Palliative and Supportive Care

If you would like to discuss future care, you can start with your GP, respiratory team or specialist nurse. You do not need to wait until you are approaching the end of life to ask questions.

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