Caring for the dying patient
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You have been given this leaflet to help you understand the changes that happen with your loved one, when coming towards the end of their life.
The dying process is individual to every person and every person will be treated with their best interests in mind.
This leaflet may have content that might be difficult to read, it uses clear and sometimes explicit words to explain what intervention to expect for the dying person and those who are important to them.
What is Palliative Care?
Palliative Care is the care of patients with life-limiting illnesses, irrespective of diagnosis or disease. The purpose of Palliative Care is to achieve the best quality of life for patients and families. This might be over a period of days, weeks, or months and sometimes years.
What is End of Life Care?
The term ‘end of life’ refers to someone who is in the last few days or weeks of life, where there is no treatment available to reverse any complications or there is no medical intervention that will change the outcome for the dying person.
Milton Keynes University Hospital takes pride in working together with medical teams, specialist teams and services outside of the hospital, providing a high standard of End of Life care for the community of Milton Keynes.
If you are unsure about the contents of this leaflet, or what is happening to your loved one, please ask a member of the ward team.
The staff are here to help you and want to deliver the best care for their patients.
The Palliative & End of Life Care Team will:
- Give advice about symptom control including advising on drug and non-drug treatment.
- Support with any changes in the dying person’s condition and help with difficult decision- making.
- Provide emotional support for you and those important to you in order to help manage your loved one’s deterioration.
- Discuss holistic needs including religious, Spiritual, and cultural aspects of care. Offer Chaplaincy services for people of any faith or none.
- Offer the opportunity to have honest, clear conversations regarding the stages of dying, what happens at the point of death and after the death has occurred.
The Palliative & End of Life Team strives to put the patient’s best interests at the heart of any decision making. This may include involvement of people who are important to the patient, their family, carers, and clinical staff.
Milton Keynes University Hospital uses a system called eCARE to record patient data. Those patients deemed End of Life, will have a specific care plan called the ‘End of Life Care Plan’ which is initiated by the Doctors. This document supports guiding clinicians into good decision-making and is reviewed regularly by the Palliative & End of Life team and/or the ward team.
Nurses document their care intervention every four hours, including mouth care, symptom assessment and ongoing support.
End Of Life Care sign and symbol:
We have dedicated purple signs with two hands holding as a symbol which can be displayed on a side room door or pegged to curtains if patent is in a bay to highlight with wider team members that patient is at End Of Life to ensure additional awareness, sensitivity and care is in place.
There are common changes which usually indicate that a person is dying.
- These can include:
- More sleepy, less wakeful periods
- Wishing to be cared for in bed
- Less need for food and fluid
- Swallowing becoming less effective
- Colour of the skin can change
- Sometimes there may be secretions in the chest that make a bubbly noise and breathing may change.
Very occasionally, patients who are thought to be dying can improve. Should this happen, your loved one will be re-assessed and managed appropriately for their needs.
Even if your loved one is unable to respond, they may still be able to hear you and know you’re there. It can help to speak to them, play their favourite music, and let them know what you’re doing, especially if you’re touching them or giving care. This may feel strange as they cannot respond, but it can be comforting for both of you.
If you would like to be part of the care for your loved one, the ward will guide and support you in this.
To give you extra privacy at this difficult time, ward staff will try to arrange for your loved one to be nursed in a side room, if this is your wish. However, sometimes this is not always possible. If a side room is not available or it is your wish for your loved one to remain in the main ward area, please close the curtains, if that helps you feel more comfortable.
Visitors are able to arrange to spend time with their loved one, through arranging this directly with the ward; however, it is encouraged to keep numbers to a small amount. Should you wish to stay overnight; the ward can supply you with a mattress or comfy chair and bed linen. Please feel free to bring in your own comforts e.g., pillows, music, pictures, or anything else that makes this difficult time as normal as possible.
On the ward there is a ‘comfort kit’ that is available to make your experience as comfortable as possible.
Care after Death
For some people of certain religions, particularly those of Muslim or Jewish faith, it is important to be buried as soon as possible after death. If this, is you or your loved one, please let the ward doctors know as soon as possible as this will allow us to try to accommodate this.
There may be questions that you might think of and have not been addressed in this leaflet, such as ‘How long do we have? What will dying look like? and Should I be here when death happens? If there are any questions that you have, that might feel sensitive or emotional, please talk with the ward team or The Palliative Team.
Please ensure that the ward have your correct contact number with times when you wish to be contacted.
Please ensure that the ward see any important documents associated with your loved ones wishes and needs at this time.
Advance Care Plan
Lasting Power of Attorney
Advanced Directive
PACT document
If you have any concerns or comments about your loved one or the treatment that they are receiving please raise this with the ward staff in the first instance. You can also speak with the Palliative End of Life Team.
The Palliative and End of Life Care Team are available:
Monday – Friday between 8:00am and 4:00pm
Weekends between 8:00am – 4:00pm
They can also be contacted via the ward staff
Palliative Care Team: 01908 996 553 answer machine service available out of hours
Milton Keynes University Hospital Bereavement Team: 01908 996155
Details regarding Registering the death of your loved one will be available in the Bereavement Pack you will receive from the Bereavement Team
Samaritans: 116 123 or email: [email protected] response provided within 24hrs
MIND: 0300 123 3393 text 86463
We are constantly working to improve our service
Your feedback is welcome on anything that has been good during your care and any areas that you feel need improving.
Facilities within the hospital
Hospital Chapel and Prayer Room
The Chapel is on the first floor close to Ward 21, and almost above the Eaglestone Restaurant. The Chapel is available for anyone to sit quietly or to pray. There is a dedicated Muslim prayer area with separate prayer space for men and women. The Chapel is open from 6am to 10pm each day. The hospital chaplain is also available twenty four hours a day if required.
Visitors’ rooms on wards
Most wards have a day room facility, please ask a member of staff on the ward who will be able to let you know where this is.
Visiting Times
During this time staff should have informed you, that you can visit the ward whenever you want. If this has not happened then please speak to the nurse caring for your loved one to confirm this.
Wheelchair service
There are several points where wheelchairs are available in the hospital which required a pound coin to operate. Please ask a member of staff who will be happy to direct you to the nearest point.
Shops
The hospital has shops in the main reception area of the main entrance which include the following:
Costa Coffee
Subway
General shop
There is also a shop situated next to the Eaglestone restaurant
Restaurant in the hospital
Eaglestone restaurant is open every day from the following times:
8am-11.30 am for breakfast
Noon – 2pm for lunch
5pm-7pm for evening meals
Costa Coffee
Is situated in the Eaglestone restaurant and is available 7 days per week from 8am- 8pm. Cash machine is also available outside the Eaglestone restaurant.
Toilet Facilities are available around the hospital. Please ask a member of staff who will be more than happy to direct you.
Please ask a member of staff if there is any other facilities you require.
Useful contacts
Milton Keynes Hospital Palliative care team. Telephone 01908 9986553 (8.30am- 4.30pm Mon-fri). On call- Sat and Sun 8.30am- 4.30pm via switchboard.
Macmillan
Cancer Centre
Milton Keynes University Hospital NHS foundation Trust
TEL 01908 996563
Macmillan Cancer Support
89 Albert Embankment, London SE1 7UQ
General enquiries 020 7840 7840
Samaritans 0845 790 9090 www.samaritans.org.uk
Marie Curie Cancer Care
89 Albert Embankment London SE1 7TP
General enquiries 0800 716 146 (free call) www.mariecurie.org.uk
Dying Matters
Tel 08000 21 44 66 Email [email protected] www.dyingmatters.org
Promotes public awareness of dying, death and bereavement.
Help the Hospices
Hospice House, 34–44 Britannia Street, London WC1X 9JG Tel 020 7520 8200. Email [email protected] www.helpthehospices.org.uk
A charity that provides a wide range of information relevant to living with advanced illness.