The End of Life Process
What may happen in the last hours or days of life
Death comes to each of us in its own time, in a way and in an experience that is as unique as we are.
Shipston Home Nursing work closely with your GP and District Nursing team and are experienced in helping to manage both physical and psychological symptoms when a person is in the last stages of life. We also try and help to ease the emotional burden that patients and their loved ones may have, allowing them to make the most of their time together. Our Nurses focus on the needs and wishes of the individual patient and aim to support them in the choices they make.
This page is intended to be a guide to some of the possibilities, remembering that nothing is absolute.
The following description of the physical, emotional and spiritual signs and symptoms of death is offered to help you understand the natural sequence of events that may happen, with some suggestions as to how you might respond appropriately. Not all of these signs and symptoms will occur with every person, nor will they happen in this particular sequence. This is a time for acceptance, support and comfort.
Physical signs and symptoms that may occur
The systems of the body begin slowing, this is not a medical emergency and does not require invasive interventions. These changes are a normal, natural way that the body prepares itself to stop. At this stage the best kind of care to give is comfort and careful management of any symptoms that may arise.
- Less energy and more sleeping. The person may need to rest and sleep more. This is normal, and due in part to metabolic changes (the way that the body makes and uses energy) that increases feelings of exhaustion. You may want to sit quietly with your loved one and hold hands. If you want to speak, it is often better to do so quietly and softly.
- Decreasing need for food and drink. The person may begin to want little or no food or fluids. This means that the body is saving energy for other functions. Do not try to force the person to eat or drink, or pressure them to do so as this may make them feel uncomfortable or nauseated. Small chips of ice, cold water or juice may be refreshing in the mouth, and lip balm can be used to keep the mouth and lips moist. You may continue to offer food and fluids but be understanding if they are refused. Your nurse can advise you about mouth-care.
- Decrease in urine output. Urine output normally decreases due to the reduced fluid intake and the urine may be darker in colour.
- Restlessness. The person may appear to be a little restless or unsettled. Do not try to restrain such movements but reassure your loved one in a calm and natural way. You may find it helpful to read out loud, talk about happy memories or play some familiar music. Your nurse or GP will be able to advise on other ways of managing restlessness.
- Disorientation. The person may be less aware of their surroundings, the time or the identity of people. You might try identifying yourself by name before you speak. Again, gentle reassurance is usually all that is required. You can discuss this with your nurse who will be able to advise you.
- Fever. The person may have a raised temperature. Your GP will be able to advise you whether it is necessary to reduce the temperature with medication.
- Congestion. The persons breathing may become more noticeable or sound a little “rattly”. This sound is caused by congestion and does not indicate the start of new or severe pain. It is more distressing for the person listening than for the patient, who is likely to be unaware of the change. Gently changing the persons position may help, and your nurse will advise if medication is required.
- Coolness. The persons hands, arms, legs and feet may become increasingly cool to the touch. At the same time, the colour of the skin may change, becoming mottled or bluish. This normally indicates that the circulation of blood to the bodies extremities is decreasing and being reserved for the most vital organs. The person is not usually aware of feeling cold.
- Breathing pattern change. The persons breathing pattern may change with the start of shallow or irregular breathing, or even not breathing at all for a period of time, followed by deep sighing breaths. This is very common and indicates a decrease in circulation. Sometimes it is associated with a change in the level of consciousness. This may be difficult to watch but be assured it is a natural process and is not painful for your loved one.
Emotional, spiritual or psychological changes that may occur
- Withdrawal. The person may seem withdrawn, less responsive, or in a comatose like state. This indicates preparation for release, a detachment from surroundings and the beginning of letting go. Since hearing is one of the last senses to remain, speak to your loved one in your normal tone of voice. You might wish to identify yourself by name when you speak and hold their hand. Try to say whatever you need to say that will help you both to let go.
- Request for spiritual or religious contact. Depending upon the spiritual beliefs of your loved one, they may request a visit from a religious minister or someone of spiritual significance to them. If you are unsure where to source such services, we will be happy to help in any way we can.
- Vision-like experiences. The person may speak or claim to have spoken to persons who have already died. They may also claim to see or have seen places not presently accessible or visible to you. This does not necessarily indicate a hallucination or drug reaction. The person is beginning to detach from this life and is preparing for the change. Try not to contradict what the person claims to have seen or heard, as it may be comforting to them. Understanding and reassurance is usually all that is required.
- Decreased socialisation. Sometimes the person who is dying may only want to be with a few people or even just one person. This is another sign of preparation for release, and it does not mean that you are not loved or that you are unimportant.
- Unusual communication. The person may make a seemingly unexpected statement, gesture or request. Accept the moment when it is offered and don’t be afraid to say whatever it is that you most need to say.
- Giving permission. Giving your loved one permission to let go can be difficult. If you feel it is appropriate, your ability to offer assurance that it is all right to let go is one of the greatest gifts that you can give.
- Saying goodbye. It may be helpful to sit by the bedside, lie in bed with the person or hold hands. Tears are normal, and a natural part of saying goodbye. Tears do not need to be hidden from your loved one or apologised for. The experience we call death occurs when the body completes its natural process of shutting down. We aim to manage this process in a way fitting to the values beliefs and lifestyle of the dying person.
How will you know when death has occurred?
Shipston Home Nursing Nurses are very experienced and have training in order to verify death. Signs of death include such things as lack of breathing, heartbeat, blinking, and no response to physical stimulation. When death occurs, you can contact Shipston Home Nursing (if we are not present), your GP or the GP out of hours service (Telephone 111) and they will also be able to advise you about what to do next.
It is useful to consider, in advance, what action you will take if your loved one dies during the night and a nurse is not present. You may be content to wait until morning to contact your nurse or GP to verify the death, or you may require more immediate support from us. This is a personal preference and either option is perfectly acceptable. In the situation of an expected death, the death of a person being cared for at home is not an emergency and nothing must be done immediately. Take time to do whatever feels right for you as a family.
Most funeral directors will request that the death has been verified by a Doctor or Registered Nurse before they will collect your loved one from home. Funeral directors run a 24-hour service but may charge more to visit during the night.
If the deceased person has not seen a GP in the last 14 days, the death will be referred to the coroner.
Further information
There is a wealth of information available on the internet, and it may seem a little overwhelming. Here are some publications we think you might find useful:
www.gov.uk ‘What to do when someone dies’
www.dyingmatters.org is also a very useful website (look at the resources section of the website) with downloadable leaflets on subjects such as:
• Talking to people who are nearing the end of their life
• Talking to children about death and dying
• Getting the facts right about death and dying
We do hope you have found this leaflet helpful. If it has raised any issues that you would like to discuss with a member of our team, please contact the duty Coordinator on 07920 480392.
Download a pdf of this Resource; End of life process