Understanding Dying

[Catherin Bergan]

Unlikeother big events in life such as birth, a new house or a new job, dying is not often discussed. Talking about dying can be hard. There is no right or wrong way to deal with death and dying. Your beliefs, values, culture, experiences and circumstances will shape your own view.

If this information stirs up emotions for you, ask for support from those around you, or contact your doctor, the palliative care team, or the Palliative Care Advice ServiceExternal Link for further information about support.

As people approach the end of their life, new issues can arise. A new symptom may become apparent or an existing one may get worse. A person approaching the end of life is likely to be less able to do the things that they did before.

This information may have already been documented in an advance care directive. The person may have also already appointed a medical treatment decision maker. There is more information on recording wishes for future care and related matters in the section on advance care plans.

If spiritual issues become a concern, seek guidance from the palliative care team or a pastoral care worker. While these matters are usually very personal, palliative care staff regard spiritual issues as a very important part of the care they provide.

Sometimes the dying process happens over a few days. This can be distressing for some people. If you are in a hospital or residential care facility, ask what they have available for visitors. Access to tea and coffee or extra chairs can make your time more comfortable.

As someone approaches the end of their life they may become more drowsy. As a person is dying they will have less energy and become easily tired. They are likely to become weaker and may spend more time asleep.

They may become detached from reality, or unaware of what is happening around them. They may be less interested in eating and drinking. They may need changes in medications and visits from health professionals.

No one can give an exact answer of when someone will die. However, the timing of someone dying can be easier to predict the closer the person is to death. Rather than dwelling on how long it might be, this time is best used to express feelings and share cherished moments together.

For some people, dying may include restlessness. This and any other concerning symptoms can usually be treated. The palliative care team will expect to spend more time with you in these later stages, so ask for help if you are concerned.

You can bring great benefit to a person dying, just by being there, sitting with them, holding their hand or speaking in a calm and reassuring way. These simple things should not be underestimated. Even when the person does not respond, they can probably hear you.

Immediately after a death is often a peaceful time. You, family and friends may just want to sit with the person. You may or may not want to be alone. Family and friends can help you during this time, sometimes just by being there.

At home there are things that you will need to organise. A written plan of action prepared in advance will help. This could be a list of things to do, with names and phone numbers. Consider which family members and friends you would ring.

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Objectives: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death.

Methods: This qualitative study obtained interview data from N = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology.

Results: Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country.

Significance of results: This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.

A small mouthful at a time may be all that can be managed or desired. Help with feeding and drinking at this time might be appreciated. Eventually, a person may stop drinking altogether. Their mouth may appear dry, so you can moisten it with a damp sponge, a baby toothbrush dipped in water, or a spray may be comforting. A lip salve will also help.

Medication is reviewed when swallowing becomes difficult. Anything that is no longer helpful or cannot be taken in the normal way may be stopped, given by an alternative route or a new preparation prescribed to treat any physical or psychological symptoms such as pain, nausea, breathlessness, anxiety or agitation.

If someone is no longer strong enough to talk about symptoms they are experiencing, pain can be shown by becoming restless or grimacing. Anxiety or agitation may also be shown by restlessness but is sometimes associated with confusion, twitching or jerky movements as well. All these symptoms can be helped with medication. If you are worried about any of these, please talk to us.

Our care is focused upon comfort and dignity. You may wish to talk about measures which can be taken to promote comfort whilst lying in bed (such as positioning and pressure relieving equipment) or the need for regular mouth care. Please ask us if you have any concerns.

Towards the end of life, as the body becomes less active, the demand for oxygen lessens. People who suffer from breathlessness are often worried they may die fighting for breath but, often it is found that breathing eases as they start to die. Breathing can be easier than it has been for a long time.

However, any breathing difficulties can be made worse by feelings of anxiety or fear. Reassurance, medication or the comforting knowledge that someone is close at hand can make a real difference. A much loved pet may also play a major part in reducing breathlessness caused by anxiety or fear.

Occasionally, in the last hours of life, there can be a noisy rattle to the breathing. This is due to a build up of mucus in the chest which the person is no longer able to cough up. Medication may be used to reduce it and changes of position can also help. The noisy breathing can be upsetting to hear but it does not appear to distress the dying person.

The dying process is unique to each person but in most cases, there are some common signs which help to indicate that a person is dying. The breathing pattern may change again. There are sometimes long pauses between breaths and/or the abdominal (tummy) muscles will take over the work. The abdomen rises and falls instead of the chest.

Breathing can appear laboured but this is more distressing to you than the person dying. Medication can be given if there are signs of distress but these changes in breathing are an expected part of dying.

Some people can become more restless and agitated as death approaches. Medication can be administered in the form of pain relief and/or a sedative to help ease any symptoms which may be causing the person distress.

The skin can become pale and moist and slightly cool prior to death. Most people do not rouse from sleep but die peacefully and comfortably. Their breathing will get slower and eventually stop. Sometimes it is difficult to pin point the exact moment of death. After a short time, the body may relax completely and look peaceful. Even though the death is expected, it can still be a huge shock when it actually happens.

You may phone the funeral director, if you wish, while you are waiting for the nurse/doctor to visit (or you can wait until afterwards). The funeral directors will provide further guidance at this difficult time.

If you are at Searle House when your loved one dies, the nurses, doctors, chaplain and bereavement team are here to help you work through your worries and concerns, and to offer you care and support at this sad and challenging time.

Our 24/7 cancer helpline provides information and answers for people dealing with cancer. We can connect you with trained cancer information specialists who will answer questions about a cancer diagnosis and provide guidance and a compassionate ear.

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