End of Life Booklet

END OF LIFE CARE

How this information can support you All of the staff and carers at Vida understand that, as a resident reaches their final weeks and days of life, family members require extra support and information about what might be expected as your loved one is dying.

shock, guilt and fear of the unknown, to relief, sadness and acceptance. The journey for you has been full of change and loss already and this final stage can bring up many new feelings. There is no right or wrong way to feel.

At this difficult and sad time, we want to help you to understand the changes that may occur, the medication we might use and the equipment provided to maintain comfort and dignity.

Here we are committed to ensuring that you and your loved one receive the best possible care. However, through feedback and evaluation we are aware that sometimes things do not always go to plan. Please let us know at any point if you feel that something is not as it should be for you.

It is possible that you might be feeling many different emotions ranging from

How can we tell someone might be in their last days or short weeks of life?

It can be difficult to predict and give accurate ways of telling when someone is in the last weeks and days of life. This can be more challenging when someone has been living with dementia where their condition can deteriorate and stabilise throughout their illness.

The doctors and nurses will be assessing and observing for changes in your loved one’s condition such as withdrawal,

behavioural changes, weakness, sleepiness, reduction in eating and drinking on a regular basis. These changes may occur suddenly or over a period of days or slowly over weeks. All reasons and considerations will be made before deciding that the emphasis of care is now moving from active treatment to comfort and dignity.

How do we monitor and control symptoms as deterioration occurs?

Maintaining comfort and reducing the possibility of symptoms is essential to our care provision. Swallowing can become more difficult at this time and add to risks of choking. Review of medications and their benefit will be carefully considered. Some tablets may be stopped if swallowing is a problem. Other medications may be given in a different way such as those previously been given to prevent distress, anxiety, hallucinations breathlessness and pain. These are given in liquid form or a small injection under the skin. Low doses are used to start with and monitored and changed as necessary.

Please let the team know anything that you feel will bring comfort and care to your loved one.

Syringe drivers Often it is beneficial to control symptoms by a continuous dose of the medication to prevent peaks and troughs, which may increase the possibility of reoccurring symptoms. In this case we would consider a syringe driver and discuss with you the use of this for your loved one. A syringe driver is a small pump that delivers the medication through a soft plastic needle just under the skin. A combination of medication can be used if necessary and doses are reviewed regularly by the medical team.

What to expect as your loved one deteriorates

Being there

Care after death

Eating and drinking

Changes in breathing

You may already have noticed changes in eating and drinking patterns due to the effects of the dementia. When someone is in the last weeks or days of life this can diminish further. When someone is close to dying food and drink does not make them feel better. The body does not have the energy to digest food and this can add to symptoms. Small amounts of soft food, ice cream and ice cubes can be effective in keeping the mouth moist. The team on your house will continue to offer food and drink. Please ask for anything that you feel might be comforting.

Eventually the appetite will disappear completely and the emphasis will be on keeping the mouth clean and moist.

Breathing can become the focus of attention as you stay with your loved one.

You may notice the patterns changing, sometimes fast or slow or irregular. There may also be periods where there are long pauses. There can also be signs of ‘noisy breathing’. This can sound like there are secretions in the throat and chest as swallowing becomes difficult. This can be distressing for you to witness but usually does not affect your loved one.

Repositioning and sometimes medication can be helpful.

Although you have been involved with all areas of Vida in continuing to care for your loved one, it might not always feel right for you to stay when they die. It is a personal choice and there is no right or wrong decision. Sometimes there are steady physical changes in how someone might look, feel and behave.

It is also possible that someone might die suddenly and it might be that death occurs when you are not there. Let the staff know what feels right for you.

When your loved one dies the staff will support you through what to do. There is no rush and you may spend as much time as you need. If there is anything that you would like to happen after they have died please inform the staff. The staff will be continuing to care for you after death occurs. Attention will be given to your loved one by washing and changing clothes and bedding if necessary.

Artificial fluids and nutrition At this stage it would not be beneficial to artificially feed or to consider a drip.

This does not normally help symptoms, dry mouth or in prolonging life. It can also add to breathing problems or swollen limbs as the main organs are slowing down and unable to process the burden of extra fluids.

Restlessness There are often episodes of restlessness, particularly in someone with dementia.

Sometimes this occurs when there is pain, distress, anxiety, the need to change position or to pass urine. If no cause is found we will give a small dose of sedating medicine. Other things can help like reassurance knowing someone is there and calm surroundings.

Sleeping It is likely that your loved one will sleep for longer periods as they deteriorate.

This sleep will become deeper and mean that they may not wake up. This is part of the natural dying process, even if medication is not being used. However, at this time it is possible that your voice can still be heard and a sense of you still being close to them is felt. Voices, music and television may be a source of comfort, at other times peace and stillness may be more beneficial.

Everyone reacts differently often experiencing a range of emotions or no emotion at all. Numbness, shock, disbelief, sadness, anger or just a sense of relief. You may also experience some physical feelings such as dizziness and nausea. However you react is a normal response to a very sad situation.

The following information will inform you about what happens next.

The GP does not usually need to visit to confirm death.

The district nurses may visit to remove the syringe driver if care has been provided in a residential house.

Your funeral director can be called to arrange a visit and they will provide information and support for ongoing care.

The GP will be informed and will complete a death certificate. You can arrange to collect this usually the following day.

Once you have received the death certificate you will need to register the death within 5 working days.

Please contact the Registrars Office to make an appointment.

01609 780780 Or book online: northyorks.gov.uk/registering-death The address for the Registry Office is: Bilton House, 31 Park Parade Harrogate, HG1 5AG

Peace of mind through trust and understanding for all.

www.vidahealthcare.co.uk

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Harrogate