Ageing, Illness and Dying

1. Introduction

Some adults may use care and support services for many years, and for some they may use the same service for a majority of those years. Services, therefore, must be able to care for people as they get older, as their needs increase and in their final days.

Adults should be helped to live as well as possible, before being able to die with dignity and as comfortably as possible. At all stages, they should be asked about their wishes and preferences and these should be taken into account by staff and family, as everyone works with the adult to plan their end of life care.

Whilst all attempts to abide by their wishes will be made, there may be times when this is not possible, due to their specialist needs for example. This should be discussed with them and their family. Staff should also support the adult’s family, carers or other people who are important to them.

The service is fully committed to the Care Quality Commission’s Fundamental Standards, which ensure that the ageing, illness and death of an adult in the service is handled with sensitivity and respect by all staff involved.

2. Ageing

The adult’s wishes concerning their ageing, illness and death should be discussed with them, or their family as appropriate, as part of the assessment process (see Assessment). It should also form part of the care and support plan, and be discussed at each review (see Care and Support Planing and Review of Care and Support Plans). The adult’s wishes should be adhered to wherever possible, but where this is not possible it should be discussed with them, their family and their circles of support.

As an adult in the service ages, their care and support needs should be kept under constant review in order to be able to respond quickly and appropriately to any new health or wellbeing issues (see Preventing, Reducing or Delaying Needs).

In agreement with the adult, their family and other involved professionals, it may be necessary to adapt their environment and the care provided to them in order to meet their needs.

Every effort should be made to ensure the adult continues to be cared for in the service, if that is what they wish and their care and support needs can be met. If this is not the case, alternative care may have to be considered and discussed with the adult and their family as appropriate, and other members of the multi-disciplinary team and plans made accordingly (see Section 3, Illness and Dying – below).

3. Illness and Dying

As soon as it is recognised that an adult is terminally ill or in the final stages of their life, a planning meeting should be called, which should include the adult (where appropriate), the family (providing full consent is given by the adult where they have mental capacity), the key worker, other relevant staff in the service and any other involved professionals.

The meeting will focus primarily on the known wishes of the adult and will agree the following:

• whether the adult wishes to and is able to remain within their current environment or whether they would prefer to be cared for somewhere else, for example a hospice or other registered care setting;
• where the adult wishes to move elsewhere, the practical issues of such a move and who would provide care and support;
• who will provide any nursing care that is needed;
• any religious beliefs of the adult, and any customs they wish to be followed;
• support networks for family staff and other adults in the service;
• the arrangements in the event of the adult’s death, including who should be notified, by whom, and whether family members want calling in the night should that be relevant;
• funeral arrangements, including the type of service, who will arrange it and how will it be funded.

All decisions made must be fully recorded in the care and support plan, including where there is disagreement between different parties and how this is resolved.

Meetings should be held regularly throughout the adult’s illness or failing health, and the care and support plan updated as required as a result.

4. Managing Pain and other Symptoms

Managing symptoms, including pain, is vital for the comfort of an adult who experiences chronic pain or as part of a terminal illness. People experience different symptoms; these will vary depending on their condition, and the kind of treatment they may have. Symptoms can include nausea and vomiting, constipation, loss of appetite as well as different levels of pain.

It is vital that staff, in conjunction with doctors and nurses involved in the adult’s care, help the adult manage their symptoms so that they are as comfortable as possible.

4.1 Pain

Where an adult is experiencing pain, they must be given the appropriate drug and dosage to manage it. Staff should find out information about the pain from the adult, including:

• where the pain is located;
• how severe it is;
• when it started;
• the effect it is having on them – whether it is preventing them sleeping or eating for example;
• whether there is anything the adult does that makes it better or worse.

The local pain management or palliative care team may be involved.

Where the adult is experiencing side effects from the analgesic medication, such as drowsiness or sickness, symptoms should be reported to the prescribers who should respond accordingly.

4.2 Constipation

Constipation can be a side effect of some medication, and can also occur if the adult is not eating and drinking very much.

Where the adult is suffering from constipation, provider staff should inform the family and also the doctor or nurse involved in their care who should prescribe laxative medication.

In addition, the adult should be encouraged to eat high-fibre foods (where possible) and drink as much fluid as they can.

4.3 Loss of appetite

An adult may lose their appetite due to their condition or the medication they are taking. Especially if they are at the end of their life, the approach ‘little and often of whatever they fancy’ is most appropriate. Staff should encourage them to eat small amounts, when they can. Snacks of their choice should be left within reach, so they can help themselves when they want.

Staff should discuss the adult’s appetite with them, to ascertain what they like to eat and drink and talk to them about the importance of maintaining adequate food and fluid intake (see also Meeting Nutritional and Hydration Needs).

This information can be helpful for family and carers too, as they may be worried if they think the adult is not eating enough.

4.4 Other methods of managing symptoms

Other ways of managing pain and other symptoms, without using drugs, include physiotherapy and complementary therapy. Some people find complementary therapy, such as massage or reflexology, can help them feel more relaxed. The multi-disciplinary team should arrange for the adult to receive such interventions as required.

5. Care of the Dying Person

Daily routines of washing, bathing and personal grooming and care should continue, although the way in which these are carried out should be adapted according to the adult’s needs and wishes, depending on their condition. Personal care should always be carried out in such a way as to preserve the adult’s dignity at all times.

Nursing advice must always be sought in relation to mouth and oral care. Risk assessments must be completed if there is a risk of aspiration.

Staff should be trained in prevention of pressure sores. Where necessary, a referral should be made to the district nurse for prevention advice or treatment, including arranging any equipment.

The adult should be kept pain free, where at all possible (see Section 4, Managing Pain and other Symptoms).

If they are not able to eat, meal replacement drinks can give provide some nutrition (these can be prescribed by the GP). This should be discussed and planned with the doctor (see also 4.3, Loss of appetite).

All staff working with the adult must recognise and be able to respond appropriately to the person’s emotional and psychological needs. They may experience feelings of anxiety, fear and may become depressed, angry or withdrawn. The response of staff must be appropriate. The adult may benefit from another professional visiting at such times such as a religious leader, or a particular family member or friend. Staff should discuss this with the adult or their family and it should be included in the care and support plan for implementation when required.

Relatives and friends of the adult should visit as often as possible and at any time. They should be kept informed of the adult’s condition and offered comfort and support by staff. This should be carried out in accordance with agreed arrangements documented in the care and support plan.

Staff should ensure they are supportive of each other during such difficult times and the manager should be aware of any individuals who may require extra support and ensure this is made available to them through supervision, group discussion or external support. This is particularly important for staff who may be experiencing the illness and death of a service user for the first time.

When death is inevitable, staff should ensure that the adult dies with dignity and in peace, with family and friends present as appropriate. Either a relative or staff member should be with the adult when they die. If required by the adult. An appropriate religious person may be requested to visit.

Noise levels in the vicinity of the adult should be kept to a minimum, for example radios and televisions, although some adults may find everyday background noise comforting.

6. Resuscitation

Everyone has the right to make choices and decisions about their treatment in the event they need to be resuscitated and these wishes must be respected in such situations.

Some adults may have completed a Do Not Resuscitate (DNA) order or Advance Decision to Refuse Treatment (ADRT – also known as a Living Will) following discussions with their medical practitioner.

There may be times when the adult has taken signed such documents and does not want their family or friends to know. This should be recorded in the care and support plan and their decision respected by staff.

Where an adult lacks mental capacity (see Mental Capacity chapter) to be able to take such decisions and has not previously signed a DNA or ADRT, these decisions will need to be made on their behalf and in their best interests. In such circumstances it is the doctor’s duty to act in the adult’s best interests, using their clinical judgement to decide whether to continue or discontinue treatment. This should be made in discussion with the adult’s relatives, but they cannot demand treatment (including resuscitation) which the doctor believes is not going to be helpful. If the adult does not have a family member or friend to support and represent them, the responsible clinician should refer to an Independent Mental Capacity Advocate to act on the adult’s behalf, as serious medical treatment would be withheld and these circumstances come under the Care Act (see Advocacy chapter).

All care staff will receive guidance and training in resuscitation, to give them opportunities to discuss attitudes and feelings over such issues and to understand their respective roles and responsibilities in such situations.

In cases of a sudden or unexpected collapse, where a person has not made any previous orders or has mental capacity and is able to give an indication of their views on being resuscitated, all efforts to resuscitate them should be undertaken. This should be in accordance with the competence and qualifications of the available staff to offer emergency treatment. In most cases it will be vital to call medical help and the emergency services, without delay.

Only care staff who are competent and qualified to undertake resuscitation techniques, including the use of appropriate equipment and appliances, will be expected to do so. All staff, however, will be expected to provide care and support as they are trained to do so, prior to the arrival of emergency services or medical help.

Following medical or emergency services attendance, treatment interventions will be initiated as appropriate. If care staff are aware that the adult has a DNA or ADRT document, this should be shared with the medical team.

7. Responding to an Expected Death

In the event of the death of an adult, the service manager should be informed, who in turn should inform their line manager. The out of hours manager should be informed where the adult has died outside of usual working hours.

The adult’s GP’s surgery should be notified immediately, who will arrange for a doctor to visit and confirm their death. They will issue a document confirming the death (this is not the formal death certificate).

After the adult has died, and as decided with the line manager, care staff may lay the person flat in bed, wash their hands and face, put any false teeth in where possible and comb their hair and make them look as comfortable as possible. Clothing should be changed if necessary.

The member of staff, in accordance to agreements made at the planning meeting, will inform the adult’s family where they were not present at the person’s death.

The adult’s relatives may want to sit with the person for a while, especially those who have been come after receiving information that their relative has died. They should be offered tea or coffee, and the senior care worker dealing with the adult’s death should talk to them about their death and provide any reassurance, support and information that they can.

The adult’s death and any relevant information prior to their demise should be fully recorded in their case records.

The service manager, or their nominated deputy, must notify the Care Quality Commission of the adult’s death, within 24 hours (see Notification of Death of a Service User).

Once the relatives are aware, the doctor has visited and medical confirmation of the death has been issued, the agreed undertaker should be contacted. The undertaker will arrange for the collection of the body. The confirmation of death document should be given to the undertaker who collects the body.

Most undertakers carry out last offices paying special attention to religious preferences and customs.

The death must be registered within five days to the Registrar of Births and Deaths for the area in which the death occurred. This can be done by the adult’s family or the manager. The Registrar will issue a death certificate.

The person registering the death will need to take the confirmation of death document and details of the deceased including their:

• full name;
• date and place of birth;
• occupation;
• marital status;
• maiden name, where applicable;
• date and place of death
• details of any state pensions/allowances.

The Registrar will issue a Death Certificate (additional copies can be bought if required) and a ‘Certificate for Disposal’ (the green form), which should be taken to the Funeral Director so arrangements for the funeral can proceed.

8. Responding to an Unexpected Death

In the event of an adult dying unexpectedly and initial confirmation by care staff that the person has died, staff should not move the body.

The GP and emergency services should be notified immediately. The service manager or out of hours manager should also be notified immediately, by the member of staff in charge of the shift.

If the adult is in an area of the service where they can be seen, care staff should screen their body and move others away from the area in a calm and quiet manner. If the adult died in their own room, the door should be kept closed.

The area or room must be preserved intact as found, until police have given permission for preparations for the body to be removed.

The adult’s key worker or other delegated worker, should note the time of death or the time the adult was found.

No records must be changed, removed or altered. Medication must be kept intact and not removed from the service until permission is given to do so.

The service manager should make necessary arrangements to inform the adult’s next of kin / relatives. This should be carried out in accordance with agreed arrangements documented in the care and support plan.

After visiting and confirming the adult’s death, the doctor may decide to inform the local Coroner. If this is the case the doctor will not issue the Death Certificate.

The Coroner will pay for the removal of the body to the mortuary for a post mortem examination. The Coroner will issue the necessary certificates.

Once the deceased has been removed from the home, staff, service users and any relatives / friends present should be allowed to talk about how they feel and encouraged to support each other.

The manager will arrange counselling and support sessions as appropriate for both staff and service users.

9. In all Cases

Case records should detail whether the adult has a funeral plan, and also details of their wishes in the event of illness / dying which may also include the wishes of family / close friends.

The manager must immediately report to the regional director, responsible individual and the care manager and ensure the Care Quality Commission is informed of the service user’s death within 24 hours see Notification of Death of a Service User).

In the absence of a relative or close friend discussions should be held with other professionals and the local authority about arrangements for the funeral and dealing with other administrative requirements, for example informing the Department of Work and Pensions in relation to any benefits or pensions received.

All possessions belonging to the deceased should be packed and stored safely until a relative can collect them, or the service has been given permission to dispose of them. Where an adult was living in their own home, and there is no family or friends to be responsible for the property, discussions should be held with the local authority to arrange next steps.

All medication belonging to the deceased must be kept for a period of seven days. See Medication for information concerning the safe disposal of the service user’s medicines.

All documents relating to the service user must be kept and stored safely (see Record Keeping).

Staff and service users should continue to receive adequate support and recognition through supervision, meetings or professional counselling.

Palliative care, practical assistance and advice, and bereavement counselling are provided by trained professionals/specialist agencies if the service user wishes. There are a number of organisations that can offer counselling and support to people who have been bereaved. Examples are:

• Cruse Bereavement Care – helpline for bereaved people and those caring for bereaved people.
• The Compassionate Friends – support and friendship for bereaved parents and their families.

The manager is to arrange appropriate training for staff in working with terminally ill and death of a service user.