Appendix 2: Preparing for an expected death at home

Preparing for an expected death at home

In our experience, many people with an imminently terminal illness want to die at home where they feel safe and comfortable. However, for the family facing the death of a close friend or relative at home can be a time of ongoing worry.

To die at home is often a last wish. Loving carers are needed to make this happen and though professional carers are available they are unlikely to be so 24 hours a day. Family and friend carers are still needed and will probably be preferred by the one dying. Most homes, though not all, are suitable for the death of a frail person needing personal help.

Local doctors and nurses can provide the necessary equipment as well as expert pain and other symptom relief, but a lot of responsibility falls on close family and friends. Contemplating managing a death at home requires thought, a quiet determination and a small band of practical and acceptable helpers. It might not be easy but can be a final act of love and devotion.

Few of us have witnessed a death. What exactly is going to happen and how will we cope? When I was working as a cancer doctor I was often asked ‘what will happen?’ My answer in general was that the person would become weaker and at the end gradually fade away. Now, having become involved with friends in my community whose close relatives have died or are expected to die in the near future, I realise that this, though generally true, was an inadequate explanation. Faced with this situation we need to know more.

The most frequent questions are:

When will it happen?

How will I know it is happening?

What will happen?

When will death happen?

The medical team prepares and gives as much information as possible. They make sure appropriate and sufficient medication is available. But no one can be sure just when death will occur. Doctors and nurses can only give an estimate and are often surprised themselves by how long or how short a time someone in this situation lives.

How will I know and what will happen?

These questions have a similar answer and we list here the indications that the end is coming as the body gradually shuts down and prepares for the end of life:

Eating and drinking often becomes less and chewing and swallowing slower. Small amounts, especially of what is fancied, should be offered but not forced. Dry lips can be moistened.

Quietness is often preferred as is the presence of just a few or even only one person. With weakness and tiredness speech is often slow or even impossible.

Sleeping usually increases, communication decreases and at times the person might become unresponsive or not able to be roused. This is a time to sit with them, holding their hand and speaking softly. They are likely to continue be able to hear even if they seem to be asleep.

Restlessness can occur with the bodily changes. Try not to fight this but speak calmly and reassuringly. Light hand or forehead massage, reading or playing soft music sometimes helps.

Disorientation or confusion can occur. Try not to contradict what the person is saying. Listen respectfully. Not infrequently the dying person ‘sees’ people who died some time ago or ‘sees’ angels appearing in the room or at the window. These are not hallucinations or anything to do with the medication but the ‘normal’ detachment from this life.

Other changes as death approaches. Incontinence of bladder and bowels can occur so that effective pads and bed protection are needed. The District Nurse might be able to supply these ‘just in case’. The urine can become very concentrated and look like strong tea. This happens as the kidneys gradually shut down.

Changes in breathing: fast, slow or with gaps can occur. Unusual breathing noises are common and the skin colour can change and become dusky. If the arms and legs feel cold try using covers but be prepared for the person to throw them off. A light sheet might be tolerated. These are all normal changes and do not need to produce alarm. These changes are not easy for those caring to experience but the care and presence of the family or close friends is an act of great love, which you can give at the end of life.

Saying goodbye can be an important part of dying. Often the dying person wants to see those who have been special to them over the years. They might ‘hang on’ until they have seen those they need to and until they can be sure that those left behind will be OK without them. Family and friends need to be able to confirm that they will be OK and give ‘permission’ for the person to leave. Tears are normal and do not need to be hidden.

It is not unusual for a person to die just when everyone has left the room, however briefly. Try not to feel hurt or disappointed by this, the person knows you have been with them.

At the time of death breathing and heartbeats stop, the person relaxes so that the eyes are partially open, the jaw slackens and sometimes the bladder and / or bowel empty.

This is a time to be still or, if you are alone, to call someone to be with you. It might be appropriate for the family to have discussed, at an earlier time, who will be called and when.

There is no urgency to call the doctor or funeral director. This can be done all in good time. Death often occurs during the night and if so it is reasonable, as long as a friend or relative is with you, to wait until the GP surgery opens in the morning to report the death.

Sources:

Cancer Research UK, Choosing where to die: https://www.cancerresearchuk.org/about-cancer/coping/dying-with-cancer/making-plans/choosing-where-to-die

Marie Curie, Final moments of life: https://www.mariecurie.org.uk/help/support/terminal-illness/preparing/final-moments