Bereavement - Care and Support in the last days of life

Introduction

This leaflet provides information for families and others in relation to caring for a person in the last days of their life. This includes information about symptoms that may be experienced, the care and support which may be given and some questions that are frequently asked at this difficult time.

The leaflet has a space for you to write down any notes you would like to remember.

Finally, there is a page for you to write down any concerns or questions that the healthcare professionals may be able to help you with.

What is important to me and/or my family/significant others?

Patient Name:
 

 

 

 

 

 

What happens when a person is dying?

Individual experiences in the last days of life can vary from person to person; it is very difficult to predict what exactly will happen. Some common signs and symptoms may show that a person is entering the last days of life. Knowing what to expect may help to relieve anxiety and allows better planning.

• Someone who is dying may become very sleepy and spend most or all day in bed resting and sleeping. Periods of being awake may reduce and eventually the person may be deeply asleep all the time
• They may have difficulty swallowing or not want to eat and drink
• They may struggle to take tablets or medicines by mouth
• They may lose control over their bowels and bladder
• Sometimes the person may show signs of being distressed or restless
• Their breathing may change and can sometimes become noisy
• The person may become confused or disorientated
• They may become emotional and have spiritual questions
• They may lose interest in their surroundings and withdraw from people

For many people, dying is very peaceful. It can be upsetting to watch a person go through these changes. This is part of the natural dying process and does not necessarily mean they are uncomfortable or in distress.

The healthcare professionals looking after the person in the last days of their life will be checking for any changes and will do all that they can to make the person as comfortable as possible.

The SWAN Model of Care

We use the Swan Model of Care in our hospitals to ensure individualised care is given with dignity and respect to each patient and their loved ones in the last days of their life. In hospital, staff will display a Swan symbol on the curtain or door of the area in which your loved one is being cared for, with your permission.

What does SWAN mean?

Signs
Words
Actions
Needs

Stopping observations and medicines

A person may have been taking some medicines for many months or years which may need to be stopped or changed if they are no longer helpful. The doctors and nurses will discuss this with you.

Blood test and routine observations, for example; blood pressure, temperature and regular blood sugar measurements may no longer be done. In the last days of life these may not be of benefit to the person and may cause distress.

Symptoms and Care

Changes in breathing

The breathing pattern can change as the body slows down. Breathing may be fast, shallow or deep and there may be pauses between breaths.

Should breathlessness be experienced, there are simple measures that may help. These can include opening a window, using a fan or changing position.

Medical treatments may be needed for breathlessness, whilst morphine is usually given for pain, it may also be used for breathlessness and can be very effective. This may be given by an injection under the skin or as a medicine by mouth.

Oxygen requirements may be reassessed and, whilst it may be useful for some patients, oxygen may no longer be needed.

Chest secretions

Everyone makes secretions (fluid) in their chest and throat. When someone is in the last days of their life, the normal secretions that they have cannot be cleared and they may make the person sound 'chesty'. This is due to a build- up of fluid in the air passages.
 
The breathing can sound noisy but is not normally distressing for the person. Changing the position of the person may help.
Medications can also help to reduce the build-up of secretions and these can be given by injection.

Pain

Not everyone who is dying will have pain. Even if the person has difficulty communicating, it is usually possible to tell if they are in discomfort and the doctors and nurses can check for this.

If there is pain, it is reassuring to know that there are several ways of relieving it. Changes in position may help the person in pain. However, for others it may be best not to change the position. This will be assessed on an individual basis. Drugs such as morphine can be useful and can be given as a medicine by mouth or by injection when needed. Medications will not be given unless they are needed.

Distress and restlessness

As part of the natural dying process, the person may become confused, distressed or restless. Sometimes hallucinations may occur. This can be difficult for family and others to see, but measures can be taken to improve these symptoms.

It can help to keep the environment calm and quiet and to gently reassure the person by holding their hand and talking to them.

Medicines are available which can help relieve these symptoms. The doctors and nurses caring for the person will check for any other causes that may be contributing to the distress.

Sickness and vomiting

When a person is in the last days of their life, they may feel sick. There are many possible reasons for this, which the doctors and nurses will assess on an individual basis. The person may feel sick when they are moved or certain smells may trigger sickness.
 
Medicines can be prescribed to help relieve this symptom via an injection.

Opening Bowels

As a person becomes weaker and their condition deteriorates, they may not be strong enough to use a toilet or commode.
Often the bowels slow down and do not work as normal. Occasionally, due to muscle weakness, the person may lose control of their bowels. If they are very weak and are unable to get out of bed, then pads may be used.

Bowels will be assessed by the doctors and nurses with the aim of maintaining dignity and comfort. This may include use of suppositories to ensure a regular bowel pattern, to prevent pain or distress related to bowel movements.

Passing Urine

As the body naturally slows down, the person may pass little or no urine and the urine may become very dark in colour. Due to weakness, it may be too distressing to assist the person on and off a commode or toilet. In order to maintain dignity and comfort, pads can be offered.

For some people it may be kinder to have a catheter to drain urine from the bladder. This will preserve their energy and ensure they remain dignified and comfortable. If appropriate, this will be discussed with the patient, family and others.

Catheters can also be used for people who have signs of retaining urine, which can cause distress and restlessness.

Eating and drinking

In the last days of life, a person’s need to eat and drink reduces. Some people may be able to take small amounts of food and drink, others may only be able to take sips of fluid and some may not wish or be able to take anything at all.
 
When a person is close to death, though it is possible to give fluids by a drip into the veins (IV) or under the skin (subcutaneous), it is uncertain whether this will prolong their life or help them feel better. The potential risks and benefits of fluids given by a drip in the last days of life will vary from person to person, which the team looking after your loved one will assess regularly.

For patients who are very close to death, there is no definite evidence that feeding via tubes or drips lengthens survival or improves quality of life. In addition, there are risks and potential discomfort related to inserting feeding tubes.

It is comforting to provide good mouth care and ensure that the mouth is clean and moist. Gels and saliva sprays may be given to help with this. Families and others can be taught to clean the person's mouth, if they wish. If a person is unable to drink, frequent care of the mouth and lips should be offered.

If you have any concerns or questions related to this, please discuss it with the healthcare professionals.

Giving medicines using a Syringe Pump

Sometimes a syringe pump (a small portable pump) may be set up by your doctor or nurse. The syringe pump is used to deliver a constant dose of medicines over 24 hours and may contain more than one medicine at a time.

A very small needle or tube will be inserted just under the skin, through which the medicines will be given.

A syringe pump means that the person can have the medicines they need continuously and do not need a lot of individual injections.

If the person is at home, the district nurse will bring the syringe pump with them. This can be left in the person’s home, should it be needed. This would be arranged by the GP and District Nurses.
 
The family or others may need to collect any medicines from a chemist and they must be stored in a safe place. Injectable medication will be administered by a healthcare professional.

Common medicines used to relieve symptoms in the last days of life

Possible side effects related to each medicine can be discussed with the nursing and healthcare professionals.

Place of Care in the last days of life

The person and their family may have wishes about where they should be cared for at the end of their life. Some people may have made their wishes known about this in advance. It is important that we talk to you about this, so that where possible, a person's wishes can be met.

If cared for in hospital, the persons family can stay by the bedside. The ward staff will discuss with you the facilities available e.g. shower, car parking, food and drink.

People can also be cared for in their own home or care home in the last days of their life. If the person is in hospital when this decision is made, the doctors and nurses will plan with the aim of getting the person home as quickly as possible.

District Nurse visits will be arranged dependent on the person’s need. The District Nurses are available and can be contacted in an emergency, both night and day. Other services in the community may be available including Hospice at Home, the Care Home Palliative Care Team and the Community Specialist Palliative Care Nurses.

Hospice care may also be provided in some circumstances. The ward or Specialist Palliative Care Team can make a referral to your local hospice as appropriate.

The out of hours GP service can also support care at home.

End of Life Comfort Measures

What matters most to you and your loved one is essential information to help ensure all the staff in the ward/team meet you and your family's needs. You may find it helpful to write down what is important to you in the notes section of this leaflet. If the person is in hospital, this may include the privacy of a side room on the ward or unit, if this is possible.

Please feel free to ask the nurses to remove unwanted equipment from the room and ensure you make the room more personal. You may wish to bring the person's own night wear, blanket or dressing gown from home.

A camp bed could be placed next to the bed for you, if you do not wish to lie on the bed, so you can be at the same height. Some families and others may want to be involved in assisting the nurses with comfort and care. If you do, please tell the nurses.

Families may want to record familiar sounds; children, grandchildren or family members who cannot be present, either singing or talking to the person. Playing favourite music may be soothing. Children are very welcome to visit and say goodbye to a loved one. If you wish to have a keepsake, such as a hand print, lock of hair or a photograph, then nursing staff will be able to help you with this.

Emotional, Spiritual, Religious and Cultural needs

At times of challenge, change and especially when coming to the end of our lives or that of our loved ones, we can all feel anxious, emotional, or overwhelmed at times, or all the time. When we or someone we know is in the last days of their life, we may find talking to someone can provide the support we need. Sometimes this support can come from family and friends but sometimes it helps to talk to someone different.

Healthcare Chaplains can listen confidentially, without judgement, and with kindness. They are ready to support you and your loved ones through this time. They are also able to support, show compassion and provide sensitive advice/guidance, depending on what you require.

At this time, you or your loved ones may wish to have your beliefs (religious or non-religious), spiritual, cultural or emotional needs supported. Chaplains can support in many ways for example, by compassionately listening; helping you to fulfil your wishes; connecting you to someone you need to speak to; acknowledging or even celebrating a significant moment (for example, a special birthday, anniversary or getting married to your loved one) as well as supporting any spiritual or belief-based requirements you might have.

Healthcare Chaplains are approachable and non-judgmental and are available 24 hours a day, 7 days a week, to provide support for you, your loved ones and others in the hospitals.

If a person has spiritual or religious needs at home, nurses can contact local churches and appropriate faith/ belief groups to support you. Healthcare Chaplains can be contacted by the nurse for advice regarding accessing support at home, if required.

For further information regarding emotional, spiritual and belief- based support available during office hours, please contact the Chaplaincy and Spiritual Care Teams below.

Fairfield General Hospital
Telephone: 0161 778 3568 during office hours or via Switchboard 0161 624 0420 available 24/7 in an urgent situation.
Link Corridor, near Pharmacy

Royal Oldham Hospital, Rochdale Infirmary and Floyd Unit
Telephone: 0161 627 8796 during office hours or via Switchboard 0161 624 0420 available 24/7 in an urgent situation.
Chaplaincy Dept, Chalmers Keddie, Royal Oldham

Salford Royal Hospital
Telephone 0161 206 5167 during office hours or via switchboard 0161 789 7373 available 24/7 in an urgent situation.
Chaplaincy and Spiritual Care, Level 3 Hope Building

Care after death

The death of someone close to you is very significant and everyone reacts very differently to the situation. Through a person’s end of life care and care after death, all people will be treated as individuals; with staff working to ensure their dignity is maintained and they are treated with the greatest respect.

After the person has died, they will be seen by a doctor or nurse. The nursing staff will then ensure the person is cared for before being taken to the mortuary or to the funeral directors.
 
The nurses will ask if anyone in the family wishes to assist with this care (washing/dressing).

It may be possible to visit the person who has died in the mortuary and arrangements can be made, please ask the nursing staff for advice. Unfortunately, sometimes for reasons beyond our control, there may be circumstances when this is not possible, and this will be explained to you.

If the death of the person is at home/care home, they will be seen by their GP or nurse who will ensure that the person is cared for before going to the funeral directors of your choice.

If your loved one’s faith/belief/culture requires them to be buried as soon as legally possible after death, please ensure you ask the nurse caring for them to page the Chaplaincy and Spiritual Care Team (24/7) via switchboard to enable them to try and facilitate this. Occasionally there may be reasons why we are unable to fulfil this request, in which case we will explain this to you.

Organ and Tissue Donation

When a person has died, they may be able to donate organs or tissues (e.g. eyes, skin, heart valves) for transplant. It may be possible for this donation to take place up to 24 hours after their death. If you would like to speak to a specialist nurse about organ or tissue donation this can be arranged.

At Salford Royal Hospital referral to the NHS Blood and Transplant service (NHSBT) is automatic and if your relative/loved one is eligible you will receive a call from a Tissue Donation Specialist Nurse or a Bereavement Specialist Nurse to discuss the option of donation.

Frequently Asked Questions

What happens if my relative gets better?

Occasionally, a person’s condition can improve. If a person gets better, the care they need will be reassessed by the doctors and nurses caring for them. The care and treatment will be discussed with you.

How long can we stay with the person once they die?

Following their death, you may stay with the person for as long as you feel you need, within reason.

What will happen to my loved one’s personal belongings?

The personal belongings may be taken, as appropriate, by the next of kin.

What do I tell the children?

Talking to children about a person approaching the last days of life can be challenging and exactly what you tell them often depends on their age. Generally, it is best to be as honest as possible with children, avoiding euphemisms.

This may be distressing and hard, but it can help children deal with things after the death a little better.

The team caring for the person can advise you further regarding booklets and literature that may help you talk to your children.

What would happen if the person deteriorated and I wasn’t around?

If you are not around when your loved one deteriorates in hospital, the nurses on the ward will call you to inform you as you may wish to come in. The nurses will observe them closely and comfort them until you get there. If the person is at home, the person with them should telephone the district nurse team.

Can the person hear and communicate with us even if they seem deeply asleep?

People vary. Some people communicate by squeezing hands until they are too weak to do so. Some may still be able to communicate a little.

As their condition deteriorates further, they will be able to communicate less. Sense of hearing is a strong sense and it can be comforting for the dying person to hear familiar voices from friends and family.

Is it best to let them rest and not disturb the person?

This is very individual, depending on the person's preferences and what they find comfortable. Nurses may try to locate a side room for your loved one, however, this is not always possible and so as much as possible will be done to ensure a calm ward environment.

If the person is at home, a calm environment may be preferable.

Contact Numbers for all Hospital sites and Community Settings

Please ring the relevant Hospital/Community telephone number where your loved one is being cared for.

Royal Oldham Hospital and Oldham Community
Hospital Specialist Palliative Care Team - 0161 778 5918
Oldham Community Specialist Palliative Care and District Nursing Teams - 0161 357 5190 or mobile 07540 675294.

Fairfield Hospital and Bury Community
Hospital Specialist Palliative Care Team - 0161 778 2679
Specialist Palliative Care Team 0161 206 4354 8am-4pm Monday to Sunday
District Nurses/Out of hours for palliative patients 0300 323 3316 8am-4pm/0161 716 1557 5pm-8am.

Rochdale Infirmary and Rochdale Community
Heywood/Middleton/Rochdale Community and Rochdale Infirmary Specialist Palliative Care Teams (SPCT) - 01706 752360 Mon - Sun, based at Springhill Hospice.
Rochdale District Nursing Team - 01706 517702

Salford Royal Hospital and Salford Community
Hospital Specialist Palliative Care Team - 0161 206 4609 8.30am - 4.30pm (Mon to Sun)
Salford Community Specialist Palliative Care Teams (SPCT) (based at St Ann's Hospice) - 0161 702 5406 between 8am to 6pm (Monday to Sunday)
Salford Palliative Care Homes Team - 0161 206 1868 8am - 6pm (Mon - Fri)
Salford District Nursing Team - 0161 206 0604 8am - 6pm (Mon - Fri). On weekends, Bank Holidays and after 6pm - 0161 206 8921
 
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