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What to expect when someone is dying

A guide for families, friends and carers

St Luke’s Hospice

Contents What happens when someone is dying?

Changes in the last days of life

When someone dies in the Inpatient Unit

When someone dies at home

Registering the death

Funeral planning

Wills and legal matters

Remembering the person in support of St Luke’s

Accessing bereavement support

Support organisations

What to expect when someone is dying

What happens when someone is dying? We want to ensure that we provide the right level of support for you and the person you support and this booklet aims to help prepare you for what to expect. We hope that the information provided helps you know what is normal and how you can help or seek advice for any signs that indicate pain or distress. Everyone’s experience of dying is unique. Not everyone will experience the same bodily changes, and some people may not exhibit any changes at all. It is normal for these changes to come and go over a period of days, and if they do go, this does not usually mean that the person is recovering.

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Changes in the last days of life Eating and drinking In the last days of life, the person’s appetite is likely to be much reduced. This could be because they find the effort of eating or drinking to be too much. It may also be due to their body having little or no need for food or drink. Eventually, the person will stop eating and drinking, and will not be able to swallow any tablets. If medication is required, it may be given by injection. Sometimes this is by continuous infusion using a syringe pump. When they stop drinking, the person’s mouth may look dry, and we can show you how to moisten the area. It is normal for all dying people to eventually stop eating and drinking. There are limited benefits to using drips, and this can also cause problems for your loved one. Please discuss this with a member of staff.

Breathing As a person’s body shuts down, it is common that their breathing may become shallower with long pauses between breaths. Sometimes this alternates with rapid breathing. Both are normal and not a sign of distress or suffocation. Sometimes the person’s breathing may become irregular and noisy. This is likely because they are not able to re-absorb or swallow the normal fluids in their throat, which can cause a rattling sound. While you may find the sound unsettling, rest assured it does not distress your loved one.

What to expect when someone is dying

Tiredness, sleep and consciousness As time goes by, the individual may become drowsy and will spend more time sleeping. Some people become completely unconscious for a period of time - this could be short, or as long as several days.

Changes in complexion and temperature The person’s skin may feel cold and change colour. Their hands, feet, ears and nose may feel cold to the touch due to reduced circulation. Occasionally, a person’s hands or other parts of the body may swell and their skin may also become mottled or uneven in colour. If the person’s hands swell, please be assured that this is not usually painful or uncomfortable.

Confusion and agitation Sometimes the person may get confused and may not recognise familiar faces. They may hallucinate, and see or hear people or things that are not actually there. In the last few days, your loved one may appear more restless and agitated but there is medication to help them settle.

Loss of bodily functions The person may lose control of their bladder or bowels. This happens because the muscles in these areas relax and don’t work as well as they did. We can offer different ways to respond to this and maintain dignity. They may also have fewer bowel movements as they eat less, and their urine may get darker as they drink less.

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What to expect when someone is dying

St Luke’s Hospice

When someone dies in the Inpatient Unit People react in different ways immediately following the death of someone they know. Some people want to spend time with their individual, while others may not. It is important to do what feels right for you.

Inpatient Unit After someone dies at the hospice and when you feel ready, one of the nursing team will verify the death, which will involve some clinical checks. For example: listening for a heartbeat, checking pupils and chest movement. The nursing team will usually wash the individuals body but you may have cultural, religious or personal reasons why you may want to do this yourself. Remember, we are here to help and support you, so please do let us know what you want to happen at this time. Please let the team know if the funeral service is to be a cremation or burial so that the relevant documents can be completed. This is something you may know immediately or may need to discuss with your family or the funeral director. You can begin to make funeral arrangements as soon as you feel able to. A member of the nursing team will go through the process with you or will be able to answer any of your queries. Once a hospice doctor has written the death certificate, a funeral director can take the deceased from the inpatient unit.

What to expect when someone is dying

The Bluebell Room

The Bluebell Room The individual will either stay in their room or be moved to the ‘Bluebell Room’ - a special room where the temperature is cooler, with an adjacent area for family and friends to have privacy to say their goodbyes. Unfortunately, we have only one room like this so it is not always possible to move a person into this room if it is already being used by another family.

Things to collect from the hospice Either on the same day or the following day, you will need to collect the individuals belongings. Unfortunately, the hospice is only able to keep unclaimed property for three months.

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When someone dies at home Please take your time. Gather the people who will want to say their final farewells. Sit with the person as long as you need to. Call your GP surgery or, if out of hours, 111, to inform of the expected death. A trained health professional will need to attend to confirm or ‘verify’ the death. When you’re ready, a funeral director can then be called to come and they will come and collect the person’s body. If any equipment was provided e.g. a bed or a commode, please contact the hospice team who cared for the person, to arrange for these items to be removed. You can also contact the company that delivered the equipment directly or District Nurses.

What to expect when someone is dying

St Luke’s Hospice

Registering the death The Medical Certificate of Cause of Death (Death Certificate) will be completed usually by the Hospice doctor or GP (home) and emailed to the Medical Examiner, who may call the next of kin. The Medical Examiner then confirms the cause of death with the Registrar. You can then make an appointment with the Registry Office to register the death. Very occasionally, and if someone dies unexpectedly, the death will be reported to a coroner. The coroner may order a post mortem examination to determine the cause of death and then issue the documents allowing the death to be registered. It is a legal requirement that a death must be registered within five working days. It is important to let the Registry Office know if the funeral is to be held within 24 hours. The person registering the death must be able to provide some basic details of the person who has died.

Information required by the Registry Office

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Date and place of death Full name Maiden name (if applicable) Date of birth Place of birth (town and country if born in the UK, country if born outside of the UK) Their home address Their last full time occupation

Surviving spouse or civil partner information

◦ ◦ ◦

Name Date of birth Occupation

Was the deceased receiving any state pension?

What to expect when someone is dying

What the Registrar will give you Green Form (Form 9). This gives you or the funeral director permission for the body to be buried or for an application for cremation to be made. Certificate of Registration of Death (Form BD8). You can complete this form to notify Social Security of the death, or you can call them on the telephone number provided on the form. Please note the death certificate requires payment. It is advisable to purchase additional certified copies of the death certificate as they will be needed by banks, housing associations etc.

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Funeral planning It is important to check whether any specific instructions were left by the individual or if any funeral arrangements were made and paid for in advance. The main requirements in England and Wales are that the death must be certified by a doctor or coroner registered with the local authority, and the body is either buried or cremated.

Contacting a funeral director You can research options locally and online. It is advisable to contact more than one firm and ask for details of their charges and services before making your selection. When you speak to a funeral director they will discuss the kind of funeral you want.

What to expect when someone is dying

Paying for the funeral Where payment for a funeral is an issue, you may be entitled to help with the funeral costs through the Social Fund. However, any payment that they make is retrospective and will never cover the full cost. It is essential to consider this when arranging the funeral. Please visit www.gov.uk/funeral-payments for more details.

Carers’ Allowance If you were receiving Carers’ Allowance for caring for the person who died, this will continue for six weeks after their death. Council Tax Benefit and Housing Benefit Check that these are in your name. If these are not then these may need to be reapplied for.

St Luke’s Hospice

Wills and legal matters Probate (administration of an estate) This is the legal process for the distribution of the deceased’s estate (money, property etc). You need to establish if the deceased had a Will. This may be found with their bank or solicitor, at home, with family or a friend, or if registered at the Principle Probate Registry.

When a Will is in place The Will may include funeral wishes, wishes regarding the deceased person’s estate and the name of the executor(s) or the person(s) legally entitled to deal with the estate. The executor(s) is (are) legally responsible for administrating the estate according to the wishes in the Will. If the Will is with a solicitor, inform the solicitor of the death. Named executors can administer the estate on their own. Information on how to do this can be found online at www.gov.uk. Executors may prefer to get the help of a solicitor to carry this out.

When there is no Will in place When someone dies without having made a Will, they are said to have died ‘intestate’, and different rules apply which can often be complicated. When this happens the law sets out who should deal with the person’s affairs and who benefits. Further information is available at www.gov.uk and www.ageuk.org.uk What to expect when someone is dying

Remembering the person in support of St Luke’s The loss of someone close to you is difficult and finding a positive way to celebrate their life can be comforting. Fundraising can be a powerful and meaningful way to celebrate the memory of someone who has died. How you choose to fundraise is a very personal decision that your family and friends will want to discuss together. There are many ways you can make positive memories whilst raising vital funds for St Luke’s Hospice.

Funeral collections You could ask friends and family to donate to St Luke’s instead of buying flowers funeral or memorial service. We can provide Paying for for thethefuneral donation envelopes, collection tins or you can set up an online tribute at stlukes.muchloved.org. Donations also be Where fund payment for a funeral is an issue, you may can be entitled to made online website using a debitFund. or credit card and help with thethrough funeral our costs through the Social giving the name of who the donation is in memory of. However, any payment that they make is retrospective and will never coverathe fullon cost. is essential Dedicate leaf St ItLuke’s Treetoofconsider Life this when arranging the funeral. Please visit www.gov.uk/funeral-payments for morefrom details. Choose our beautiful copper, silver, or gold leaves and personalise it with an engraved message. Your leaf dedication will be proudly displayed on our tree for a year. When the year comes to an end, you can choose to renew your dedication for another year or have your leaf returned to you in a beautiful presentation Carers’ Allowance box as awere treasured keepsake. If you receiving Carers’ Allowance for caring for the person who died, this will continue for six weeks after their death. Council Tax Benefit and Housing Benefit Check that these are in your name. If these are not then these may need to be reapplied for.

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St Luke’s Hospice

What to expect when someone is dying

When a Will is in place The Will may include funeral wishes, wishes regarding the deceased person’s estate and the name of the executor(s) or the person(s) legally entitled to deal with the estate. The executor(s) is Leave a lasting tribute in St Luke’s memory (are) legally responsible for administrating the estate according to garden the wishes in the Will. If the Will is with a solicitor, inform the solicitor of the death. Dedicate a rose bush, flowering shrub or an engraved brick in our quiet andexecutors beautiful memory garden at the of the Our Named can administer thefront estate onhospice. their own. memory garden is a special place where you can visit, reflect and Information on how to do this can be found online at remember all year round. may prefer to get the help of a solicitor www.gov.uk. Executors to carry this out.

Light up a Life When there Will inofplace Dedicate a lightisinno memory your loved one with a tribute

message and see your tributes shine at St Luke’s Light up a Life When someone dies without having made a Will, they are said annual event. to have died ‘intestate’, and different rules apply which can often be complicated. When this happens the law sets out who should For more information, visit www.stlukes-hospice.org/inmemory or deal with the person’s affairs and who benefits. call 020 8382 8142. Further information is available at www.gov.uk and www.ageuk.org.uk

St Luke’s Hospice

What dying What to to expect expect when when someone someone is is dying

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Accessing bereavement support Following someone's death, many people will often be able to find the help and support from family and friends. However, sometimes people may find it difficult or awkward because they do not know what to say or are afraid of upsetting someone. You may also feel that you do not want to burden family or friends with your feelings but this can be difficult to deal with by yourself. Sharing these thoughts and emotions can help adjust to and come to terms with the life we now have without the person who has passed away.

St Luke’s bereavement service St Luke’s Bereavement Support Team offers confidential support to anyone who has experienced the loss of someone who has received care from St Luke’s. If you need support or if you require further information about the service, you can contact us on 020 8382 8000. Please ask to speak with a member of the Bereavement Support Service or the Patient and Family Support Service. 20

St Luke’s Hospice

Support organisations

Bereavement Advice Centre

Cruse Bereavement Care

Samaritans

Brent Bereavement Service 020 8459 6818

020 8427 5720

Jewish Bereavement Counselling Service 020 8951 3881

What to expect when someone is dying

Muslim Bereavement Support Service 020 3468 7333

Support for children and young people Winston’s Wish

Child Bereavement UK

St Luke’s Hospice

St Luke’s Hospice is a Charity and provides its services free of charge to people facing life-limiting illnesses in Harrow and Brent. Our services are mostly funded through the generosity of our supporters, through donations, taking part in fundraising events, supporting our shops and making gifts in Wills. If you have any feedback or comments on the information contained in this booklet, or wish to know more about our service please contact us.

Ref: St Luke’s Hospice (Harrow) Bereavement Booklet Review Date: November 2027 Publication Date: November 2025

June 2025 V3

020 8382 8000

www.stlukes-hospice.org What to expect when someone is dying

The Hospice would like to thank RNS Publications for publishing this information and the following pages contain some features from services offering their help at this time. Whilst the Hospice is grateful of their support it does not endorse or recommend any of the services that they provide.

STOPPING JUNK MAIL If someone you know has died, we can reduce the amount of unwanted marketing post being sent to them, stopping painful daily reminders. By registering with our free service, the names and addresses of the deceased are removed from mailing lists, stopping most advertising mail within as little as six weeks.

Call: 0333 006 8114 OR

Visit our website: www.stopmail.co.uk

bereavement support network stop mail

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