Caring for the dying patient
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The dying process is unique to each person and in most cases a personalised plan of care is put in place to support the patient, doctors and nurses, and relatives/friends to achieve the best quality of care at the end of life.
Our staff will explain this Personalised Care Plan for the Dying Patient, to you very thoroughly, and will ensure that you understand how it will support your loved one at the end of life. Naturally, you’ll be able to discuss any questions or concerns you may have, at any time. You may find some of the content in this booklet difficult and distressing to read, particularly if you’re reading it for the first time. Getting support from other people can help. Ask your partner, a close relative or friend to read the booklet as well. You’ll then be able to discuss the information together.
Some people find it easier to talk to someone outside their own family. If you think this would be helpful, you also can to talk to a member of the ward staff, or ask to be referred the specialist
palliative care team within the hospital. If you are unsure about what is happening or have any questions, please ask. The staff are here to help you, and want to do the best they can to keep your loved one comfortable.
Further support is also available from organisations at the back of this leaflet.
There are common characteristics or changes which usually indicate that a person is dying. These can include:
• Semi – consciousness
• Being bed bound
• Reduced fluid and nutritional intake
• Inability to take oral medication.
Any one of these signs can be attributed to something other than dying; but remember that the events to be described here are happening to a person whose illness is already so severe that life is
threatened. Very occasionally, patients who are thought to be dying improve. If this happens your loved one will be reassessed and the care plan changed.
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 and let them know what you’re doing, especially if you’re giving them medicines or moving them. This may feel strange as they cannot respond, but it can be comforting for both of you. They may need to be re-positioned regularly to maintain their comfort. If you want to help with the care being given to your loved one, of course we will 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, sadly 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. Also during this time you will have “open visiting” to the ward. This means you can visit outside of normal visiting times.
What is a Personalised Care Plan for the Dying Patient?
The Personalised Care Plan for the Dying Patient is a document that outlines the best care at the end of life, irrespective of diagnosis. The plan aims to ensure that all your loved one’s individual needs are assessed and regular checks are made to make sure those needs are being met. Before the Personalised Care Plan for the Dying Patient is started, the senior doctors caring for your loved one will have made certain that any reversible causes of dying have been explored, and reversed where possible. The doctors and nurses will fully discuss the plan with you and answer any questions you may have.
Preferred Place of Care
As part of the personalised care plan, the preferred place of dying and the various options will be discussed. These may include hospital, hospice, home or nursing home. However, at times it may be in your loved one`s best interest to remain in hospital, especially if they are very near the end of life. Hospices specialise in caring for people with complex symptoms and those who are nearing the end of life. They have staff who are experts in controlling symptoms such as pain, and providing emotional support. If you would like to discuss the possibility of going to a hospice, then please inform your ward nurse who will arrange for the specialist palliative care nurse to assess, and liaise with the hospice to see if this is possible.
If you decide you would like your loved one to be cared for in your own home or in a nursing home, the Macmillan palliative care discharge nurse will visit the ward to discuss support available to you. Following this she can arrange for services to be put in place to support you and arrange a smooth transition from hospital into the community. If you feel you would like to discuss this further please ask the ward nurse to contact Haley Callaghan on 01908 660033 and ask for extension 86554 or bleep 1957, Monday to Friday 8.30- 4.30.
Spiritual and religious needs
A key element of the Personalised Care Plan for the Dying Patient requires staff to determine your wishes and those of your loved one regarding spiritual or religious needs, and anything else that is important to you all at this time. You will be asked if you or your loved one has a religious faith and you may want to consider specific support from a chaplain/religious advisor regarding special needs now, at the time of death, and/or after death. If required ward staff can arrange this for you.
The staff will explore any other values, beliefs, wishes or desires that you or your relative/friend may have at this time.
During the time your loved one is in hospital, doctors will regularly review them and will ensure communication is maintained with you. Communication with you and your loved one is so important; we have developed, as part of the care plan, a separate booklet which is kept at the bottom of the bed. This is for you to use, to write down any questions you may have and to provide any feedback you want to share with the staff. As part of the plan, this is likely to be reviewed – and your questions responded to – at least every four hours by the nurse caring for your loved one. This is an additional way of communicating with staff; naturally you’re free also to ask the nurses or doctors as much as you want to, at any time.
Medication will be reviewed regularly and any that is no longer helpful may be stopped. This is subject to the senior doctor being fully satisfied that the particular medication is no longer beneficial. As part of the plan, new medications may be prescribed promptly. The aim of this is to prevent a delay in treatment should symptoms arise. These medications will be prescribed on an ‘as required’ basis and at no point will they be given unless symptoms arise. It may not be possible to give medication by mouth at this time, so medication may be given by injection or sometimes using a “continuous infusion” – this is done by a small pump called a “syringe driver.”
The method used will be tailored to individual needs and only put into practice if there is a clear clinical need. It will be discussed with you as part of the ongoing plan. Medication will be prescribed for the following symptoms – pain, agitation, chest secretions and nausea and vomiting. It may also be appropriate to continue giving the patient some routine tests. These may include blood tests or blood pressure and temperature monitoring, but again these will be discussed with you.
Eating and drinking
Initially as weakness develops, the effort of eating and drinking may simply become too much and at this time help with feeding might be needed. Your loved one will be supported and encouraged to take suitable food and fluids by mouth for as long as possible. When someone stops eating and drinking it can be hard to accept, even when we know they are dying, as it can be a physical sign that they are not going to get better. Your loved one may neither want nor need food and/or drink. For some patients, to receive artificial fluids (given via a drip) can increase the risk of developing distressing symptoms such as chest secretions and breathlessness.
Needless to say as long as fluids are beneficial they will continue to be given. Any decisions about the use of artificial fluids will be discussed fully with you and reviewed regularly. Good mouth care also is essential in caring for your loved one and this will be part of the individualised care plan, too.
Symptoms that may occur:
Nausea and vomiting
Sometimes the illness, or the medicines your loved one takes, may make them feel or actually be sick. If this happens, as part of our plan, an anti-sickness medication will have been prescribed and can be given by a small injection under the skin.
Breathlessness and Anxiety
People who suffer from breathlessness are often concerned that they will die fighting for their breath. Towards the end of life, as the body becomes less active, the demand for oxygen is actually reduced to a minimum. Sometimes breathing difficulties can be made worse by feelings of anxiety. The knowledge that someone is close at hand is not only reassuring, but also can be a real help in preventing breathlessness caused by anxiety. If anxiety becomes an issue for the patient, and other measures have failed, medication will be available to decrease the level of anxiety.
Some people may become restless, agitated or confused as they near the end of life because the body is no longer working properly. This can lead to them behaving out of character. They might pull at the bedclothes or try to do something they are physically not capable of. Sometimes a patient cannot pass urine; this can cause agitation and a catheter maybe necessary to help settle them. However, there may be times when no reversible cause is identified and in this case medication will be available to help your loved one feel calmer.
In all cases the nursing team will assess your loved one and ensure that appropriate action is taken.
Not everyone who is terminally ill gets pain, but if your loved one does, it can be reassuring to know that as part of the personal care plan for the dying patient, the nurse caring for your loved one will review this on a regular basis. If your loved one has pain, it’s important to let the doctor or nurse know, so they can treat it effectively and promptly. For patients who are not able to communicate signs of pain, and things to look out for, include restlessness, grimacing (screwing up their face) or moving as if they are in distress. These are signs that the nurse will look for if the patient is not able to communicate.
Changes in breathing
Occasionally, towards the end of life there can be a noisy rattle sound to the patient’s breathing. This is due to a build-up of mucus in the chest, which the patient is no longer able to cough up.
Medication may be used to try to reduce this and changing the patient’s position may also help. These measures may have limited success, but while this noisy breathing is upsetting to carers and
loved ones, it doesn’t normally distress the patient. When death is very close (within minutes or hours) the breathing pattern may change again.
Sometimes there are long pauses between breaths, or the abdominal (tummy) muscles will take over the work – the abdomen rises and falls instead of the chest. If breathing appears laboured, remember that this is more distressing to you than it is to the person who is dying. Their skin can become pale and moist and slightly cool prior to death. Eventually the patient may lapse into unconsciousness and may remain in this state for a surprisingly long time (in some cases many days); although for others it is shorter. Most people do not rouse from this sleep, but die peacefully, comfortably and quietly.
This is a difficult and painful time for you; you are losing someone you love and care for. Nurses, doctors and other staff are there to help you to work through your pain, worries and concerns and to offer you care and support.
Tissue, organ and body donations
Many people think that if they have a medical condition, such as cancer, they won’t be able to donate their organs or tissue to another person when they die. However, even if it may not be possible to donate organs, you can usually donate tissue, such as the corneas of the eyes. You can ask the doctor or nurse for more information about donations. The NHS Blood and Transplant website also has information about donations and keeps a register of people who wish to donate their organs and body tissues. Some people may want to donate their body for medical research. If your loved one has expressed this wish in the past, it is important to discuss it with your GP, hospital doctor, specialist palliative care team and the bereavement service.
What happens when a person dies?
The death of someone close to you is very significant and everyone reacts to it differently. In the first few hours after their death, you may feel very shocked or numb – however well-prepared you
were. You may have lots of overwhelming emotions, such as feeling extremely upset and angry. Many people can also feel very relieved that their relative or friend can now be at peace. Most cultures and religions have processes or rituals that they carry out at the time of death. It’s important for you to do what you feel is right. There may be some things that you need to do but don’t feel that you have to do anything straightaway or rush to ‘get on with things’. If you want, you can just spend some quiet time with your loved one who has died. Many people like to sit and talk or hold hands, and see the person at peace, especially if the last few hours or days were difficult.
Following the death of your loved one, the ward will provide you with information booklets on what to do next. The hospital bereavement officer will contact you with a date for you to come back to the hospital to collect the death certificate. At this point you will be provided with advice on the next steps such as registering the death and arranging the funeral.
Occasionally, if the cause of death is uncertain and for some notifiable diseases, a patient’s death needs to be referred to the coroner. If this happens it will be discussed with you. If you are unsure about what is happening or you have any questions, please ask the nurse or doctor caring for your loved one. The staffs are here to help you, and want to do the best they can for you and your loved one at this difficult time.
If you would like further support you can also contact the Macmillan Palliative care team. Either ask the ward staff to put you in touch with them, or phone them yourself on telephone number 01908 996553, 8.30am- 4.30pm Monday – Friday.
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.
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.
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.
The hospital has shops in the main reception area of the main entrance which include the following:
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
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.
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.
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
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.