Ageing, Illness and Dying
Scope of this chapter
This chapter considers the impact of ageing and illness on a person’s needs. Ageing well is important to us all and illness, ageing and dying are all part of life. It is essential that we respond in a positive and proactive way to understand and meet changing needs and ensure the person continues to receive the best care and support possible. The quality and support a person will receive at the end of their life is just as important as the quality of care they will get over their lifetime.
Health and Social Care Act 2008 (Regulated Activities) Regulations 2014
Regulation 9: Person-centred care
Regulation 10: Dignity and respect
Regulation 11: Need for consent
Regulation 12: Safe care and treatment
Care Quality Commission (Registration) Regulations 2009
Related Chapters and Guidance
- Choice and Control
- Communicating Effectively
- Culturally Appropriate Care and Support
- Dignity and Respect
- Mental Capacity
- Participation and Advocacy
- Partnership Working
- Safe Care and Treatment
- NHS England: Universal Principles for Advance Care Planning (ACP)
- NHS England: Delivering high quality end of life care for people who have a learning disability
- NHS England: My Future Wishes: Advance Care Planning for people with dementia in all care settings
In March 2023, the following links were added to the Related Chapters and Guidance - ‘Universal Principles for Advance Care Planning’ ‘Delivering high quality end of life care for people who have a learning disability’ and ‘My Future Wishes: Advance Care Planning for people with dementia in all care settings’.
As people get older their health needs are likely to change and have a greater impact on their independence and sense of Wellbeing.
Both their needs and the care and support being provided should be reviewed regularly, and additional support from professionals and/or specialist services sought in a timely way.
- Local authority social work support to reassess needs and review the personal budget;
- Local authority occupational therapy support to assess and arrange any equipment or adaptations;
- Support from the GP to review medication or refer to a specialist health service, such as a Dementia service, Physiotherapist, Dietician or Speech and Language Therapist (SALT);
- Support from community or district nursing services;
- Support from a charitable service, such as the Alzheimer's Society or Parkinson's UK.
All requests for support should be made with the person’s consent, or in their best interests if they lack capacity.
If the person refuses to give their consent, requests should still be made if not doing so will mean that needs may not be met, or that serious harm may occur. The professional and/or specialist service should be informed that the person has not given consent so that they can make their own decision about intervening - often if they meet with the person to explain the service they provide and the potential benefits, the person will change their mind about working with them.
For further guidance see: Consent
Once another professional and/or specialist service is involved staff should work in partnership with them to ensure the person’s changing needs are understood, met, and regularly reviewed.
For further guidance see: Partnership Working
If a person is diagnosed with a serious illness, a health or social care professional is likely to speak with them about Advance Care Planning. This is a formal process of planning ahead for changing care or treatment needs. It includes things like who will provide care or treatment, where the person will be cared for and whether they would like to prepare an Advance Statement or Advance Decision to Refuse Treatment.
It is likely that the service will be involved in Advance Care Planning conversations.
Any Advance Care Plans should be used to review and update individual care or support plans as the person’s condition progresses.
An Advance Statement is a record of wishes, feelings, values and beliefs made by a person to ensure that they are known and regarded by others should they become unable to express them in the future.
They can include anything that is important to the person, including the kind of care or treatment they would or would not like to receive.
The person must have capacity to prepare the statement and be able to sign and date it.
Advance Statements are not legally binding but must be considered and regarded if at all possible.
If someone wishes to make an Advance Statement you can support them to do this.
For online guidance that can be shared with the person see Compassion in Dying: Advance Statements.
If the person has capacity to make decisions relating to treatment and expresses a strong view about not receiving a particular type of medical treatment in the future, they may wish to prepare an Advance Decision to Refuse Treatment (ADRT).
Also known as a 'living will' or 'Advance Decision', an Advance Decision to Refuse Treatment (ADRT) is a legally binding decision, put in writing and witnessed by a legal representative. It helps to ensure that named treatments are not administered when a person lacks capacity.
If someone wants to prepare an ADRT, they need to contact a solicitor. You may need to support them to do this.
It is important that all prepared ADRT’s are recorded, attached to the individual care or support plan and are easily accessible in case of a medical emergency.
When treatment options are being discussed staff must make sure that relevant health professionals are provided with the ADRT.
In practice, it is the responsibility of the relevant health professional to determine whether the ADRT is legally binding at the time it is being enforced, as there are a small number of circumstances when it can be overridden.
For further information, see: Advance Decision to Refuse Treatment.
Conversations that enable a person to plan for their own death are important, but it is key that they take place at the right time for the person and in a sensitive way.
For some people, death may be something they want to plan for whilst they are well. For others, waiting until their health needs change or deteriorate feels more appropriate. There will also be some people who may never want to talk about their death, or even acknowledge that they are unwell.
It is important to respect individual wishes and not pressure anyone into talking about something they are not comfortable with.
However, it is also important to provide opportunities for someone to talk about their death and to make plans (or review any plans they have already made).
If the time appears right for the person to talk about their death, ask them if there is anyone else that they would like to speak with. For example, they may prefer to speak with a family member, friend, health professional, religious or spiritual leader.
If the person wishes to speak with you, be led by them and what they tell you is important.
- Use simple language;
- Check that you have understood what they are saying by repeating back;
- Offer reassurance and support about anything they are worrying about.
Depending on the specific circumstances, the following are some of the things that it can be helpful to talk about in order to establish the person’s wishes and preferences:
- Would they prefer to die at home or in hospital?
- Do they want to be buried or cremated?
- Where would they like the service, burial or cremation to take place? - for example to be buried with partner or parents in their family grave, ashes to be scattered in a specific place;
- Are there any special cultural arrangements that need to be considered? - e.g., last rites, buried within 24 hours due to religious beliefs;
- In the event of their death, who needs to be contacted first and after that?
- Who will organise and pay for the funeral?
- Is there a pre-paid funeral plan in place?
- If the person has no immediate family, who should take charge of the funeral?
- Does the person want to donate their organs?
- Do they have any special requests - for example, music, clothing, do they want a photo of their special person in the coffin, flowers, or a donation to charity?
An appropriate and proportionate record of the person’s wishes and preferences should be made and stored in a place readily accessible at such a time when it is needed.
Although wishes and feelings are not legally binding, they should always be regarded and acted upon unless there is a good reason not to do so.
If the person has capacity to talk about their death and make plans, others should only be consulted with their consent. Likewise, consent must also be given before sharing their wishes and preferences with others prior to their death.
If the person does not have capacity to make plans for their death, it would normally be in their best interests to plan for their death at such a time when it seems most appropriate to do so.
If the person has a Lasting Power of Attorney or a Court of Protection appointed Deputy with health and welfare decision-making powers, they are responsible for doing this.
For guidance about making a best interests decision see: Making Best Interests Decisions.
As part of the decision-making process, it is important to ascertain the person’s wishes and feelings about potential options and to consult with those who know the person well.
End of life care is the term given to any care, support or treatment that is provided by any service to a person who is deemed to be at the "end of their life". This means that it is likely they will die within the next 12 months.
Note: Only a health clinician can make an end of life prognosis.
If you feel that a person may benefit from palliative care but has not been deemed end of life, their GP may be able to make or request a prognosis.
All end of life care has 2 primary purposes:
- To help the person live as well as possible; and
- To help them die with dignity.
Within these 2 purposes are 3 key objectives:
- To enhance quality of life;
- To ensure people have a positive experience of care; and
- To ensure people are treated and cared for in a safe environment, protected from avoidable harm.
It is important when providing care and support to someone at the end of life that these purposes and objectives are regarded and considered at all times.
Palliative care is a specific type of end of life care that manages pain and other symptoms, ensuring the person is as comfortable as possible. It must be arranged through the person’s GP.
Palliative care is a multidisciplinary approach, meaning it is provided by more than one professional or service, working in partnership to meet the end of life purposes and objectives.
General palliative care: Provided when the person’s needs are relatively stable and can be managed at the person’s normal place of residence. Nurses, therapists and other health professionals will visit the person to provide treatment and support staff to continue meeting needs.
Specialist palliative care: If needs cannot be met through general palliative care, the person may require specialist palliative care. Specialist palliative care is provided when the person’s symptoms become more complex or severe. It includes hospice care and rapid response palliative care.
Some people will only ever need general palliative care and others will move from general to specialist palliative care and back again several times.
When someone is close to death, all aspects of prior planning should be put in place whenever it is reasonable and practical to do so.
If the person is in hospital or another environment away from home, information about their wishes should be shared with the registered person of that setting.
Relatives and friends must be informed as quickly as possible when the person is deteriorating and/or if death may be imminent. All opportunities for them to say goodbye and be with the person in the last few days or moments should be maximised.
Any unsuccessful attempts to contact relatives and friends should be recorded.
If the person was at end of life and their death was expected, staff should contact the person’s GP or nearest doctor. If their death occurs out of normal surgery hours, an on-call doctor should still be available via the usual GP surgery telephone number.
The doctor will attend, issue a medical certificate and confirm that the funeral director can be contacted to organise the removal of the person’s body.
If the person has a pre-paid funeral plan or has requested a specific funeral director to be used, make sure the correct funeral director is contacted.
The funeral director can be contacted by the service or the person’s next of kin. You should always confirm this with the next of kin before making any arrangements.
Funeral directors provide a 24-hour service and have a number to ring when out of hours.
Note: If the circumstances of the death are not as expected or the person has not been under or seen by a relevant health professional in the last 14 days the doctor will need to contact the Coroner’s Office to arrange removal of the body so that the cause of death can be confirmed.
Upon finding a person unresponsive, you must dial 999 immediately and ask for an ambulance. If the circumstances are (or could be) suspicious, you should also ask for the police.
The ambulance service operator will ask some key questions to establish what may have happened and will also give you advice about starting or continuing with resuscitation, including how to do so safely.
It is important that you do not do anything unless instructed to do so by the ambulance service or the police. This includes touching or moving the person or any items in the surrounding area. The death may need to be investigated by the police, local authority or Coroner’s Office and all potential evidence must be preserved.
When paramedics arrive, they will take over/carry out resuscitation or confirm death.
The police or the ambulance service will contact the Coroner’s Office and arrange for the person’s body to be removed. In the first instance they will be taken to a hospital or a funeral director acting for the Coroner’s Office.
The police or Coroner’s Office can also advise on appropriate cleaning services if trauma was involved in the person’s death.
The Coroner’s Office carries out postmortem investigations when a person’s death is unexplained. This includes unexpected deaths and deaths in suspicious circumstances.
The Coroner’s Office will be contacted by either the doctor, the ambulance service or the police.
Following their investigation, the Coroner’s Office will advise when the person’s body can be released for burial/cremation.
Infectious diseases represent a serious public health concern.
All general and disease-specific infection control guidance should be followed when the person is ill, dying and after they have died. This includes limiting unnecessary contact and using all required PPE.
To manage any ongoing risks after death, the Health and Safety Executive (HSE) advises that sufficient information must be shared with anyone attending the scene, removing the body, carrying out a postmortem investigation or preparing it for a funeral.
If the person’s next of kin was not present when they died you should contact them at the earliest opportunity to sensitively explain what has happened and ascertain if they would like to contact the funeral director.
It may be important for family members and friends to spend time with them before they are removed. This may include cleansing the person or changing their clothing. This should all be accommodated if it is practically possible, safe and the Coroner’s Office will not be investigating.
The next of kin should be permitted to make the arrangements for removal of the person’s body if they so wish. Alternatively, they may wish for you to do this on their behalf. Everyone is different and assumptions about the level of involvement/support the next of kin would like the service to have should not be made.
All the person’s current medication (including PRN medication) must be kept for 7 days after their death and/or until the Coroner’s Office has completed their investigation.
If the death was expected and the person does have the capacity to donate their organs for transplant and does not have any next of kin, the doctor in attendance and/or funeral director may remove the person’s body to a hospital rather than a funeral home.
This is in line with the ‘Opt Out’ system of organ donation. For further information about this see: Organ donation law in England.
Under Regulation 16 of the Care Quality Commission (Registration) Regulations 2009, the registered person of all services registered with the Care Quality Commission (CQC) must notify them of the death as soon as possible.
A failure to notify the CQC is an offence and the CQC can prosecute the registered person and/or take other regulatory action, including removal of registration.
For further information and to access the notification form see: Death of a person using the service-notification form.
If the service is being commissioned by the Clinical Commissioning Group (CCG) and/or local authority they need to be informed of the person's death. This should be done by telephone unless your CCG or local authority has different processes.
If the death occurs out of office hours or at the weekends the out of hours duty team should be informed. A follow up call should be made during office hours to check that the information has been shared with the team responsible for funding the service.
All professionals involved in the person’s care and support should be informed. For example, the GP (if the GP wasn’t in attendance), Physiotherapists, Occupational Therapists, Day Services, other Care Providers.
Depending on the circumstances, the person’s next of kin may wish to notify professionals-check first to avoid duplication.
If the local authority, solicitor or other formal service is acting as an appointee or Deputy appointed by the Court of Protection they must be notified of the death.
Appointees should liaise with the Department of Work and Pensions (DWP) and any other benefit agencies.
Deputies should liaise with the DWP and other benefit agencies, the person’s bank, any service providers with whom a direct debit or standing order is in place and any creditors for outstanding debt. They can also help with the financial management of the funeral.
All government agencies must be notified of the person’s death. This includes the Department for Work and Pensions (DWP), HM Revenue and Customs, the DVLA and the Passport Office.
The easiest way to do this is to use the ‘Tell Us Once’ service. Whoever registers the person’s death will be supported to use the service or given a unique reference number to use the service themselves online or by phone.
For further information see: Tell Us Once
If the person was not a British citizen, then the relevant embassy should be notified of their death.
Contact details for all foreign embassies in the UK can be found at: Foreign embassies in the UK
Too many people with a learning disability or autism are dying early, often with illnesses that could have been treated or prevented.
The Learning Disability Programme (LeDeR) is an NHS service improvement programme set up to look at why this is happening.
The programme should be notified when a person with a learning disability or autism has died. It doesn’t matter who completes this notification.
Someone with a clinical or social work background will then be appointed to conduct a review of the circumstances around the person's death and look at the quality and standard of care that was provided.
The aim of the programme is to improve national and local services and health outcomes for people with a learning disability and autism.
For more information and to make an online referral see: Learning from lives and deaths - People with a learning disability and autistic people
All deaths should be registered within five days unless the matter is with the Coroner’s Office.
To find the nearest registry office see: Find a register office
Most registry offices require an appointment to be made, which can normally be made online.
Normally, deaths are registered by the next of kin, and staff should only plan to register the death if the next of kin has confirmed they will not be doing so.
The only staff that can register the death are those who were present when the person died, or, in the case of Shared Lives services, those who were not present but who live on the premises.
The medical certificate provided at the time of death must be taken to the registry office. Without this, the Registrar will not be able to register the death.
The Registrar will provide a single copy of the formal Certificate of Death - if additional copies are required these can be requested during the appointment or ordered online. There is an additional cost for each copy, but many organisations to be notified of the death will only accept a certified copy or original, so having additional copies can prove helpful in dealing with the person’s affairs quickly.
Once they have registered the death, the Registrar will explain how the ‘Tell Us Once’ service works so that government agencies can be notified of the death. They can either support this notification during the appointment or provide a unique reference number so the notification can be made later online or by phone.
If the person has no readily available funds to pay for a funeral and has no family or friends who can pay for it then the local authority, under the Public Health (Control of Disease) Act 1984 has a statutory duty to arrange for their burial or cremation.
If funds subsequently become available from the person’s estate, the local authority can recoup monies back.
If you feel that the circumstances above apply, the relevant team at your local authority should be contacted.
The nature of the funeral should still consider the person’s wishes and any known cultural or religious needs or preferences.
Staff should not attend the funeral of a person who has died without having sought prior consent from the registered person.
Funerals are private occasions for family and friends. Staff attendance could be deemed intimidating or intrusive, or present confidentiality dilemmas that may be difficult to manage.
Decisions about staff attendance should therefore be carefully considered.
Key questions for the registered person to consider:
- Have staff been invited to attend?
- Is this invitation general or specific to certain staff members?
- Is there an expectation that staff will attend?
- Will there be a negative impact if staff do/do not attend?
If staff have not been invited by family then it is not normally appropriate for them to attend.
If the person had no family or friends, or if their family and friends do not intend to go to the funeral, staff attendance should normally be considered.
Whilst at the funeral, staff remain a representative of the service and must always maintain professionalism regarding their appearance, communication and behaviour.
If another person being supported by the service wishes to attend the funeral, staff should speak with the deceased person’s family to make sure they are open to this. If they are, staff must plan ahead to ensure that the person/persons being supported to attend have all the physical and emotional help they may need.
If families do not wish for other service users to attend, this should be respected. Alternative methods of supporting people to say goodbye should be explored. This could include visiting the funeral location after the event or having a separate in-service memorial.
The same rules apply for wakes as for funerals.
If your service is a care home, the registered person may be asked by the person’s family to provide the wake at the service to help other residents be part of the funeral. This decision is at the discretion of the manager and should always consider the needs of residents.
It can be extremely distressing when someone dies who you have cared for or supported for some time.
Staff may also find themselves affected by the grief of the person’s family and friends, who will often turn to staff that were present at the point of death or who cared for/supported the person to reminisce or seek solace.
Likewise, other people being supported by the service may also need support to cope with the loss of the person or to understand what has happened.
Make sure that you speak with the registered person or colleagues if you are struggling with your grief or the grief of others.
Other people being supported by the service may also need bereavement support to cope with the loss of the person. This could be counselling but could also be medical help if, for example they are not eating or sleeping well.
There are many charitable organisations that provide support or counselling that anyone can access.
See: Cruse Bereavement Support
See: At a Loss
Depending on the service you provide, the registered person may also wish to consider arranging opportunities for staff and service users to celebrate and remember the person who has died or to create a place of remembrance in the grounds such as a tree or rose bush.
If the person has a learning disability, you can find all the following bespoke additional resources and guidance at the Palliative Care for People with Learning Disabilities (PCPLD) website.
- Palliative care and learning disability;
- Pain and distress;
- End of Life care planning/Advance Care Planning/funeral planning;
- Breaking bad news/talking about death and dying;
- Loss, grief and mourning.
Last Updated: March 16, 2023