Talking about and understanding death and dying
Talking about death and dying can be hard. Sometimes your relative may wish to talk to you about their illness and death. You may feel very emotional when discussing or thinking about this. It is important to remember that it is natural to feel like this and it is important to be honest with each other whilst going through this difficult process.
Being respectful of how each of you are thinking and coping is a good way to ensure good and open communication. How you understand death will depend on your past experiences, your relationships, your belief system, your culture and your values.
For many people waiting for the death of a loved one can be very difficult. There may be times when you feel you have ‘had enough’ and feel death would be a relief from suffering. Alternatively, you may be thinking ‘we don’t deserve this’ or, ‘I don’t want them to die’. All these thoughts are normal and you should not feel guilty about having these feelings. Communicating about death can prepare you for what lies ahead and help you come to terms with loss.
Spiritual care at the end of life
Spiritual needs can be important as we approach the end of life. Spirituality is an important part of human experience and is about more than religion. Spirituality is about how people understand and live their lives in view of their core beliefs and those things that give their life a deeper meaning. Some people gain strength from a sense of religion, ritual or ceremony.
Some carers find that confronting the death of a loved one leads them to think about their own mortality. You may want to seek advice from the church, a chaplain in the hospital or hospice or another religious community. Alternatively, you may want to talk to friends who share your beliefs and understanding of life or other community groups. A short video discussing spiritual issues can be found below.
What to do if your relative talks negatively
Sometimes people with a life-threatening illness may feel they are a burden, may feel depressed and may say things like ‘I just want it all to end’. This can be difficult for carers as you do not know how to respond. These types of comments are common and may be a way for your relative to explain that it is all getting to be a bit too much for them. It may help to talk to your relative; here are some questions you may consider asking.
‘Is there something in particular that is bothering you?’
‘Can I or the medical team do something to help you?’
Sometimes, just acknowledging your relatives feelings can be very helpful. Consider comments like:
‘I can tell you’re really upset’ Or ‘I know this must be awful for you’
‘I promise I’ll do everything I possibly can to support you’.
However, if your relative expresses major concerns that you find worrying ask their permission to share this with their doctor or other healthcare professional. Health care professionals have particular skills in assessing distress and planning strategies to overcome these concerns.
Where will death occur?
If your relative wishes to die at home, your healthcare team will do everything they can to support this. Sometimes, if symptoms cannot be managed at home and are causing distress admission to a hospital or hospice may be necessary. You may find it useful to talk to your relative, with the support of a healthcare professional, about where they would prefer to die though often, people change their minds. These are not easy conversations to have and additional support from other family members or from a healthcare professional can really help you through it.
Healthcare professionals understand that some people would prefer to die at home in safe and familiar surroundings. Receiving end-of-life care at home can be beneficial for carers as you do not have to adjust to hospital or hospice routines. Some carers find it difficult to provide care at home. It is important to talk to healthcare professionals about how to manage home care and to discuss alternative care arrangements like nursing or hospice care. Each situation is different, we all have different responsibilities in our lives so it is important that you are able to manage the situation and try to ensure your relative’s wishes are met. Try to avoid making promises as it may not always be possible to keep them.
Should children be involved?
If there are children in the family, make sure they have the opportunity to see and speak to their relative. Some children may not want contact and this is okay, they should not feel forced into seeing their relative. There are some guidelines about talking to children about death here. You can also talk to your GP or another healthcare professional, they will be able to advise you on how to involve children. The following example shows how children may be involved and how it is important to keep things as ‘normal’ as possible.
‘It was Friday night and the family knew their father’s death was near. Knowing how their dad loved their Friday night ritual of fish and chips, they brought the grandchildren in, sat around the bed, played favourite music, ate their fish and chips and chatted normally about their day. The patient opened his eyes, smiled approvingly at each one, and died a few minutes later’ .
How will I know when death is near?
A common question for carers to ask is, ‘how long have they got left?’. Unfortunately, no one can give you an accurate answer. The doctor may estimate based on their experience but everyone is different. Try to take ‘one day at a time’ and enjoy the moments you have left together. This approach can bring comfort and peace to both you and your relative. Expressing feelings, sharing special moments of laughter or fun can help you enjoy your time together, deal with what is happening and, help you to cope. As one carer said:
‘We were told months ago that it may only be a matter of months and for some reason I had October or November in my head. And now it’s January and she is still doing ok. Sometimes I laugh about it and sometimes I don’t know what to think. But most times I think, just enjoy’.
There are common indications that death may be near, that is, within days or weeks. Usually, if half of the following signs are present it may indicate that death is near.
- Spending large portions of the day in bed
- Unable to move from bed to chair without help
- Difficulty swallowing solid food
- Sleeping for many hours
- Not talking very much
- Occasional confusion with time, the past and people
- Unable to express the need to go to the toilet
- Changes in breathing
If any of these issues arise - talk to your GP or other healthcare provider. It is important to realise that death sometimes occurs with very little warning. However, usually, signs like those listed above give an indication that death may not be too far away. Your doctor or nurse will be able to help you identify when death is near.
This video from Central Grampians Palliative Care Services (Australia) looks at few common changes that happen when death is approaching. Knowing what these changes are and how to manage them may be helpful.
Care as death approaches
Every death is different. There are some common signs that death is nearing (see below). The amount and type of care that you want to provide at this time is up to you. Remember your GP or other healthcare providers are there to help, guide and support you.
You can ask your relative if ‘there is anything they want to do today?’ and set small goals, appropriate to their health, like making a phone call, writing a card or sorting some personal papers. Setting small, achievable goals like this can help to keep your relative focussed on the present.
Click on the headings below for additional information
placeProblems with swallowing food and fluids.Watching someone not eating or drinking can be very difficult but often, it is an indication that the body is slowing down. The doctor or nurse can decide if it is still safe to provide sips of drinks. If someone is not eating solid food do not try to force them, as this may make them choke. It is important to keep your relatives mouth moist; you may try using moisturiser on their lips or placing small amounts of water in their mouth using a teaspoon. Some patients like to have an ice lolly placed on their lips. In a few cases, to keep your relative hydrated, the doctor will provide a device which provides moisture under the skin.
placeGiving medicationsIf necessary, certain medications that were previously taken by mouth can be given in other ways such as a syringe driver. This is a small, relatively simple medical device that gives the drug under the patient’s skin. The machine is changed regularly by a nurse, in some cases, carers can become involved in this process having received training. In some cases the doctor may stop providing certain medications to your relative. If this concerns you, you should talk to your doctor or nurse.
placeMaintaining comfortIt is important to try to keep your relative comfortable. Look for signs of discomfort and, where possible slightly change your relatives position every 4 to 6 hours. It should not be necessary to change their position during the night. You may be able to get a pressure relieving device for their bed such as a specialist mattress; talk this over with a healthcare professional. If desired you may also be able to give your relative a gentle foot, hand, or shoulder massage.
placeHygiene careIn some situations the person does not need a full body wash every day. Regular hand and face washes are advised. The nurse will provide you with practical tips for looking after your relative’s hygiene. Your relative may also find it more comfortable if dressed in loose fitting bedclothes.
placeLoss of bladder and bowel controlSometimes people lose control over their bladder or bowels when they are approaching the end of their lives. There are lots of aids available to help with this and your nurse will be able to show you how to use these to keep your relative clean and comfortable. Often, the need to pass urine or faeces decreases as people approaching the end of their lives consume less food and drink. However, constipation can be a serious problem and can cause a lot of discomfort; talk to your doctor or nurse about the best way to prevent this.
placeBreathing. Breathing patterns changeAt times it may appear that your relative has stopped breathing and at other times their breathing may sound noisy or ‘rattly’; this is usually because of fluid at the back of the throat. This noisy breathing may be distressing for you but it is unlikely to be distressing for your relative; talk to your doctor or nurse as medicines are available which may help with this symptom. If breathing is difficult you may want to help your relative change their position, open a window or switch on a fan. Usually, oxygen via a mask is not required but again, talk to your GP or nurse if you are concerned.
placeConsciousnessSometimes people lapse in and out of consciousness and sometimes people may seem very alert. There may be a few words spoken and your relative may seem confused. Try to lessen confusion by introducing yourself, speaking clearly and comment on the time of day. If possible keep the room bright during daytime by keeping the blinds open.
placeRestlessnessSome people may appear restless. They may call out, groan, muscles may twitch and they may seem agitated. If these signs occur talk to your GP, nurse or other healthcare professional who will help manage these issues. You may be able to help by providing a gentle massage or changing your relative’s position. Make sure your relative is not too hot by reducing the number of bedclothes.
placeBeing thereAs your relative approaches death you may find it helpful to sit with them from time to time. It is normal to hug them, kiss, talk, reminisce, hold hands and play music. You can do all, some or none of these things – do whatever makes you feel comfortable. Your family member may lapse in and out of consciousness. Even though they may appear in a deep sleep it is okay to talk with them as often, hearing is still present. This comment from a carer illustrates the importance of communication: "I told her to go, she didn’t have to stay just for me. You know, I really believe she heard me. She seemed to be more peaceful, not as restless and she died a couple of hours later”.
Have I covered everything?
No one can cover everything and it is understandable that you may have some lingering doubts about things you didn’t do or conversations you did not have. One way to ensure you have done your best is to ask your relative if there is anything else they want or, if there is anything they want to talk about. You can ask this at different points during their illness and it may help you to understand if there is anything of importance that your relative wishes to complete while they can.
Advanced Care Planning can help to ensure that you have covered as much as possible and to ask questions that will help you prepare. See here for more information on Advanced Care Planning
The timing of death and saying goodbye
The timing of death is beyond our control. No matter what time of the day or night, healthcare services are there to help. Some carers are sad if their loved one dies while they are not there.
Remember, you cannot be with your relative every minute of the day or night. If you know death is near, you may like to say important things to your relative, that way, if death does occur when you are out of the room, you will not feel as though important things were left unsaid. It is okay to say goodbye as many times as you like. If it seems that death is close you may want to contact close relatives and friends or you may ask someone to do this for you.
When a person dies they will stop breathing, there chest will not move, they will stop breathing and their pulse will stop. The person’s eyes and mouth may remain open.
When a person dies they can often look different. They may appear pale, hands and feet may feel cool (this is because blood is not circulating). The jaw might drop slightly (as muscles have relaxed). There may be some passing of urine or faeces.
Sometimes if the person’s position is changed there is an escape of air from the lungs, which sounds like breathing out or sighing.
If you think, (you don’t have to be sure), the person you are caring for has died the doctor will need to be informed so that a death certificate can be issued. They will also advise you on the next steps to take. The funeral company should also be notified and you can arrange when you would like them to call.
People’s reflections on the image of their deceased relative vary, some good and some not so good. It is common however for carers to say that their relative appeared serene, content and at peace when they died. Some people like their relative bathed and dressed in particular clothing. The nurse or funeral director may be able to help you with this.
In many palliative care situations, especially those associated with chronic illness, the dying process is predictable, with changes occurring gradually over many months. However, it is important to understand that death can occur suddenly, often leaving carers unprepared. This situation may result in unanswered questions, particularly if you, the carer, were not present at the last moment.
- What was the cause of death?
- Did he/she suffer?
- Could the death have been prevented?
If death occurs in a hospital, hospice or residential home you can still ask for some time alone with your relative or have close friends and family visit. If you are unsure about anything please ask a healthcare professional. Give yourself time but you may want to talk to a member of staff to discuss their policy on personal items and things that are important to you.
It may help if you have prepared for this death. In an earlier part of this web resource we provided information on advanced care planning . This allows you to make preparations in advance and can reduce your concerns as death approaches. Regardless of how well you are prepared or how busy you are with practical tasks you will probably still experience the normal emotions that are associated with loss.