Palliative End of Life Leaflet

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Introduction

Our patients and their loved ones have told us how important it is to know what to expect when someone is nearing the end of their life. This leaflet contains information to help you understand what usually happens and the care we give, when someone is believed to be in the last days and hours of their life. Nothing can take away the feelings of grief and sadness, but having information may help you cope at this difficult time. This leaflet will hopefully answer some of your questions. However, if you have any more questions, please ask the staff caring for your relative or ask to be referred to the specialist palliative care team within the hospital.

Recognising dying

 It can be hard to know when a person is entering their final weeks, days and hours. When the team looking after a patient believes they are dying, and only have days or hours to live, they will explain this to you. You will be able to discuss any questions or concerns you have with these staff members. If it is possible to discuss changes in physical health and decisions about care with the patient, staff will do this. However, the person who is coming to the end of their life may not be well enough to communicate. For this reason, the views of family and friends are very valuable in planning and giving the best care to the patient.

Some people die very quickly with little warning and others gradually become worse over several days. Occasionally, people believed to be dying improve and their condition stabilises. Every day, senior staff will check to make sure the care being given is correct for your loved one’s current condition. If there are any significant changes, they will discuss this with you.

Changes that happen when someone is dying.

 Every death is different. It can be difficult to predict how someone will look in their final hours but there are certain common physical changes that you may notice:

• People often become drowsy, spending much of their time sleeping.
• Their skin may become pale and moist. Their hands and feet may feel cold.
• As they get more unwell, they may have very little interest in their surroundings, even their close family. This is a natural part of the process of withdrawing from the world.
• Eventually they will become unconscious. For some people, this period will be short but for others it may last several days. Though unconscious, they may still be aware that you are there, be able to feel your touch and be able to hear your voice.

Care for the dying patient

Communication – During the time your loved one is in hospital, doctors and nurses will regularly review them and ensure that communication is maintained with you. We would like you to discuss your wishes with us so we can provide the best care and support possible to you and your loved one. We would like you to tell us what is important and what matters to them and to you. Please make sure ward staff know how to contact you and when you want to be contacted.

It may be that your loved one does not want to die in hospital. We will discuss their preferred place of death with you. Other options may include 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 or going home or to a nursing home, then please inform your ward nurse who will arrange for the specialist palliative care nurse to assess.

Medications

Medication will be reviewed regularly and any that are no longer helpful may be stopped. This is subject to the senior doctor being satisfied that the particular medication is no longer beneficial. As part of the care plan for the dying patient, new medications will be prescribed. The aim of this is to prevent a delay in treatment should new 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 is usually appropriate to stop tests and measuring blood pressure and pulse when some one is dying. Instead, we closely monitor and treat other things such as symptoms, dry mouth etc.

Eating and drinking

As people become sicker and more tired, 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. However as people get closer to dying it is  normal not to  want to eat and drink- the body does not need food and drink in the same way. Sometimes an infusion of fluid can be helpful but for others this can increase the risk of developing distressing symptoms such as chest secretions and breathlessness. 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 will be given regularly. We are keen to follow the ‘taste for pleasure’ philosophy – which is where dying patients can have mouth care with their favourite flavours – such as juice, tea, chocolate, ice lollies, alcohol

Symptom management

 Symptoms that may occur include:

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 care 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 reduced to a minimum. It is very unusual for patients to die feeling breathless. 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.

Agitation
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. Restlessness can also be caused by emotional distress. If this is the case, you may find it helpful to talk to a trusted professional, close friend or spiritual or religious leader. 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.

Pain
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.

Incontinence

A person who is close to death may lose control of their bladder and bowels. This can be helped by equipment such as incontinence pads or a catheter (a narrow, plastic tube that goes into the bladder).

The final moments of life

For most people, the final moments of dying are peaceful. The dying person seems to be deeply asleep. Their breathing becomes slower and more irregular with long gaps in between breaths. At some point they breath out and the breathing simply stops. This might take place over a few minutes but it can be a longer process.

Comfort care

It is very important that staff who are providing care meet your and your loved one’s needs. Some families and friends may want to be involved in assisting the nurses with providing personal / hygiene care. If you would like to be involved, please let the nurses know. You may wish to bring in personal belongings for your loved one such as photos, nightwear, or a blanket from home.  Families may want to record familiar sounds, such as children, grandchildren or family members either singing or talking to the person. Playing favourite music may be soothing. On each ward there is an ‘End of Life Comfort Box’ that is available to make your experience as comfortable as possible. This box contains a radio, lamp, sound device for relaxation, hand cream, dry shampoo, toothbrush and other items.

We encourage family and friends to spend time with their loved one and have a policy of flexible visiting. Should you wish to stay overnight, the ward can supply you with a mattress or comfy chair and bed linen. Children are very welcome to visit to say goodbye to a loved one. Please talk to the nurses to arrange this.

We also acknowledge that it can be difficult to be there all the time, so we have a Butterfly Volunteer service. Butterfly Volunteers are volunteers that can visit any dying patient, to sit with them, read to them or simply come and support you by listening to you and to relieve you to have a break if that is what you wish.

You can directly contact this service by emailing [email protected] or phoning 07811976721 (please be mindful that this service runs between Monday-Friday and between the hours of 09:00-16:00)

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. We have a dedicated sign (a purple butterfly) which can be displayed on a side room door or pegged to curtains if patient is in a bay to highlight with wider team members that patient is dying to ensure additional awareness and sensitivity.

Spiritual and religious needs

A key element of good end of life care 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. 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 applies to your loved one, please let the ward doctors know so we can plan for this.

The hospital’s chaplaincy team provides pastoral, spiritual and religious care to the whole hospital community, 24 hours a day, every day of the year. Being seriously unwell yourself, or having a loved one who is, can throw up a huge range of complex emotions. Chaplains are specialists in providing non-judgmental and attentive listening which enables people to feel cared for and supported at a distressing and difficult time. They do this in a way that is centred around you as an individual and prioritises your experience and worldview.

If you would like more information about the chaplaincy service, you can ask the ward staff for a leaflet.  You could also go to the Chapel & Quiet room and knock on the door of the chaplaincy office.  The chaplaincy service can be contacting by phoning  01908 996061 (for all urgent calls please ring via switchboard on 01908 660033)  or emailing [email protected]

Tissue, organ and body donation

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- this enables other people to see again. 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 after 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 the yellow bereavement booklets on what to do next. You will be contacted by a Medical Examiner. A Medical Examiner is an independent senior doctor whose job is to review the patient record to check that tests and treatments were done as they should have been, to address the bereaved person’s concerns and questions, make sure the correct patients are referred to the coroner and to make sure the information on the death certificate is accurate.  Once the death certificate has been written, it is emailed to the registrar and the bereavement team phone you to talk you through the next steps.

Useful contacts

Milton Keynes University Hospital Palliative Care Team:  8am – 4pm every day

Contact via ward staff or leave a message on 01908 996 553

Milton Keynes University Hospital Bereavement Team: 01908 996155

 Online bereavement support –  sueryder.org

 Samaritans: 116 123 or email: [email protected] response provided within 24hrs

MIND: 0300 123 3393 text 86463

Counselling: British Association for Counselling and Psychotherapy (BACP) Tel: 01455883300  www.ba