The nurses, doctors and other staff are here to help you as well as the person you care about. The staff will try and help you work through your worries and concerns and offer you care and support at this most difficult of times.
The staff looking after your loved one will have explained to you that there has been a change in their condition which means that the person you are caring for is dying and is entering the last few days or hours of their life.
We realise that thinking about the last days or hours of someone’s life, especially when they are close to you, is extremely difficult.
The dying process is unique to each person, but in most cases a plan of care can be put into place to support you all. This leaflet outlines the changes you might notice and how we will look after you all. You should have been given information about the care being provided and what to expect with regards to your loved one.
It can be difficult to take a lot of information in at such a difficult time, so you might want to read this booklet in sections, or come back to it from time to time. The team looking after you and your loved one are there to answer any questions and provide you with support, so please talk to them whenever you feel the need.
At this time the comfort of your loved one is our priority and the teams will discuss what is important to you all regarding wishes, feelings, faith, beliefs and values. Our teams will do all we can to support your loved one’s wishes.
Please do not hesitate to speak to one of the team if you feel that there are things that we can do to support their final wishes – this may include preferred place to die, personal wishes such as favourite music, films, or a visit from a pet for example if they are in hospital.
Many lives are saved and enhanced through organ and tissue donation every year. It is important that wishes regarding organ and tissue donation are respected as far as is possible. Only a small number of people die in circumstances that would allow organ donation to take place, but many more people are eligible to become tissue donors. There are numerous tissues which have the potential to be donated for the benefit of others and this can take place up to 24 hours after a person has died. Donation does not delay funeral plans or prevent you from seeing your loved one after they have died. The decision to donate is, of course, very personal. If you would like more information or to talk about what may be possible for your loved one then please speak to a member of staff or call Tissue Services on 0800 4320559 (24 hour telephone).
If you wish, staff caring for your loved one can arrange for keepsakes such as handprints, hairlocks or lip kisses. Please speak to a member of staff who can support you to arrange these. Alternatively you may wish to speak to your Funeral Director.
We will do our best to take into account your loved one’s wishes. If you know of any particular needs or wishes that they might have, please tell the staff about them.
We will work with you to maintain your loved one’s comfort and manage any symptoms they may have. We will keep you informed on what is happening. The plan for their care will be reviewed on a regular basis and, working with you, the staff will change the care as needed.
Please be assured that we will give the best care we can to your loved one. If you would like to be involved in their care we will support you in this, however there is no obligation. We recognise that what is right for one person is not always right for another, so please speak to the team looking after your loved one to decide what is best for you all.
The main aim of the care we provide at this time is to maintain comfort and dignity. In many cases this goal can be achieved where appropriate care planning and support is available. You may notice that we stop doing regular tests and observations such as taking blood or measuring temperature. This is not because we are providing less care, but because the focus of care is comfort.
Many medications that have been used to control long term conditions can be safely stopped. Stopping them may ease the burden of taking tablets and may help people feel better as side effects from these medications fade.
Please let us know if you feel that the needs of your loved one are not being met, or if you have if you have any concerns at all.
It is important to be aware of what to expect and how to make the experience as comfortable as possible.
Your health team will advise you on the medications that can help with controlling symptoms experienced at the end of life.
When approaching the end of life, people often spend more time asleep than awake.
Try to imagine what the person you are caring for would want. Provide familiar sounds and sensations, a favourite blanket for example, or piece of music. Keep the environment calm by not having too many people in the room at once and avoid bright lighting. This can reduce anxiety even when someone is unconscious. Even when they cannot respond, it is important to keep talking to them as they can most probably hear right up until they die.
People approaching the end of their life can have a variety of symptoms. Staff will regularly review the situation and take steps to keep your loved one comfortable and settled. Some common symptoms that your loved one may experience include :
Pain is not always a problem. However, some people may be in pain when they are dying. If your loved one is less awake they may grimace or groan to show they are in pain. There are medicines that can be given to ease the pain, please speak to staff who are looking after your loved one. This may be as a liquid, a tablet or an injection or medication given continuously under the surface of the skin.
The staff will check your loved one’s position in bed to see if this can help to ease pain and discomfort. Your loved one may be too weak to move and this can cause discomfort. The staff will alternate your loved one’s position from lying on their back to each side. This can be supported by using pillows or rolled up towels to support them and also to support under their arms and between and under their legs.
If these symptoms occur they can take many forms. Your loved one may not recognise familiar faces or find it difficult to settle. They may not be sure about where they are. This can be a difficult experience for you. Please talk to staff if you are finding this the case. Some people become distressed when they have a full bladder or their bowels need to be opened, your health team can assess if this is the case. Your loved one may become distressed if their pad needs changing due to soiling, please speak to staff looking after your loved one to assist with this.
Try to reassure your loved one by talking to them calmly and sitting with them. Touch can be effective in doing this too. There are also medicines that can be given to help settle and relax your loved one, the staff caring for your loved one will assess this.
Sometimes breathing changes as the end of life approaches. You may notice long gaps between breaths. Sometimes breathing can become noisy with fluid at the back of the throat. This sound can be upsetting to hear, your loved one will not be aware of this. Please talk to staff if you are finding this the case.
Breathless and cough can be another cause of agitation and distress and it can make it difficult to communicate. Don’t expect your loved one to talk and give them time and space to respond. Reassure them that the unpleasant feeling will pass. You can offer reassurance by talking calmly and opening a window to allow fresh air in. If possible, sit your loved one up with pillows rather than lying flat as this can help the sensation of not being able to breathe.
You may notice that your loved one’s skin becomes blotchy. Their hands or feet, arms or legs may feel cold to touch. This is a result of the blood circulation slowing.
Sometimes people can feel nauseated or sick when they are dying. If vomiting, and unable to sit up, turn the person on their side to protect their airway. There are medicines that can be given to help relieve this.
Sometimes it may be too disruptive for the person to have a full wash. Just washing their hands, face and bottom can feel refreshing.
Staff will keep your loved one comfortable by regularly washing, please speak to the person caring for them if you would like to help with this.
As the body shuts down it no longer needs food and fluid to keep it going. When a person is dying they often lose their desire to eat or drink and finally their ability to swallow. They can lose weight rapidly.
This is often difficult to accept because we often equate food with health and feeding people as an act of love. However, hunger and thirst are rarely a problem at the end of life.
Continue to offer a variety of soft foods and sips of water with a teaspoon or straw for as long as the person is conscious (but allow them to refuse it). It’s important not to force food or drink onto someone who no longer wants it. Remember to sit them up when offering food and fluids to avoid choking.
When a person is no longer able to swallow some people want them to have fluids via other routes like a drip, but at the end of life this offers little, if any, benefit. The body cannot process the fluid like a healthy body can and it can be harmful to artificially feed and hydrate. Risks include infection at the insertion site or in the blood, and fluid overload resulting in swelling or even breathing problems.
While people rarely complain of thirst at the end of life, a dry mouth can be a problem due to breathing mostly through their mouth.
It’s important to keep lips moist with a small amount of un-perfumed lip balm to prevent cracking.
Regularly wet inside their mouth and around their teeth with a moistened toothbrush whether he or she is awake or has lost consciousness. A soft toothbrush can be dipped in your loved one’s favourite flavour, that may be juice, tea, coffee or alcohol. Check for sore areas and white patches on the tongue, gums and inside the cheek which can be sore. If this happens tell the person’s healthcare professionals as it can be treated easily.
Caring for a dying person can be exhausting both physically and emotionally. Take time out to eat and rest. Try to share the care with other people when possible and remember it is OK to leave the person’s side to have a break. Please speak to the team caring for you and your loved one if you need any additional support.
Telephone numbers are at the back of this booklet which includes the community care coordination and Trinity Hospice Advice line.
You should be given information to help you stay with your loved one. Advice and support for you for your future care needs you may like to draw upon the support of friends, family members and others who are currently supporting you. Our Swan Team are here to support you during your loved ones last days and also after your loved one has died. Please speak to a member of the ward staff who can arrange for the team to come to the ward or alternatively you can speak to them on 01253 952456.
The ward staff will inform you that you may visit your loved one at any time. The staff may refer to this as ‘Open Visiting’ and if you wish to stay overnight with your loved one, the ward staff will try to meet your requirements.
Staff will provide you with information with regards to which bathroom facilities you will be able to use.
If you travel to Victoria Hospital by car, then the ward staff will issue you with a form for you to take to the car parking office that will allow you to park in our multi-storey car park for free. If you travel to Clifton Hospital by car, please speak with the ward staff and they will inform the hospital support staff that car parking is free for your family. Information about public transport is available from the hospital reception desk.
Restaurant
The ward staff can provide you with a voucher that will provide a discount in the restaurant.
Chaplaincy and Spiritual Care Team
Spiritual Care team, representing a range of faiths and denominations, are available for both patients and their loved one. If you would like the support of a Chaplain, please speak to the nurse caring for your loved one as the Chaplaincy Service is available 24 hours per day, 7 days per week via the Hospital Switchboard. For faiths not represented within the Hospital Chaplaincy Team, please speak to the staff as they may be able to contact an appropriate person.
Blackpool Victoria Hospital Main Office: 01253 953876 / 956299 (non urgent calls), or via the Hospital Switchboard for on call (urgent calls).
There is restricted and monitored access to the hospital out of hours. If you receive a call from ward staff and wish to visit a relative at night, then they will provide you with the appropriate access point and parking arrangements.
• When the person close to you is planned to be reviewed by medical and nursing teams.
• Regular communication from staff who will keep you informed about changes in your loved one’s condition (the member of staff may be different on different days).
• What to do when your loved one dies.
Being by the bedside of someone you love who is dying isn’t easy. To help a little here is some advice based on the experience of leading palliative care consultants, nurses, chaplains, friends and relatives. You can find the following information at www.theartofdyingwell.org
• Be attentive to what your loved one wants – you are there to support them.
• If something concerns you about your loved one, seek out help or advice.
• Sitting at the bedside can be exhausting so try to eat, drink and take regular breaks.
• Aim to create some personal space around the bed, particularly if your loved one is in hospital.
• Don’t feel you have to sit in silence – gentle background conversation or music can be comforting.
• Organise a regular email or set up a WhatsApp group to update family and friends.
• Consider bringing small children for a brief visit and inviting older ones.
• Let your loved one sleep – they may be sleeping a lot in the last days.
• The dying person may speak about dead relatives coming to meet them – listen and don’t be afraid.
• Remember those important last words that you, and they, might like to say: ‘thank you, I’m sorry, I love you’.
• Holding your loved one’s hand is often more powerful than words.
• Don’t be surprised if your loved one dies when you are out of the room – it happens a lot.
• Be prepared for a change in breathing patterns – it’s normal for your loved one to stop breathing and then restart and this may sound like a gasp. It indicates the terminal phase of their illness.
• Be prepared also for their breathing to sound laboured and for a gurgling sound caused by fluid building up at the back of their throat.
• Reassure your loved one that they are free to let go – this ‘permission’ is often taken.
