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What happens when someone is dying?

Knowing what to expect when someone you love is dying can relieve some of the anxiety of this time. For most of us, the dying process is unknown, but there are certain things that commonly happen which you can look for.

Dying is normal. It is something we all have to face one way or another. But knowing a little of what to expect, can help not only you but the person who is dying. Not everything happens in a particular order and not all of these signs and symptoms will occur. Most of them relate to the natural closing down of the different organs and functions as the body wears out and illness or disease overcomes us.

The body prepares itself for the final days of life in the following ways

Fluid and Food

Often the person’s interest in eating and drinking starts to wane. The body doesn’t need food in the same way it normally would and food that is taken is not used by the body in the same way.

Give the person food they want to eat, not what you think they should have. They are not dying of starvation, they are dying of a terminal illness.

Small, attractive meals offered intermittently are best. Let the person decide how much and when to eat and drink.

Some people may develop difficulty in swallowing, so don’t force anyone to take anything if they don’t want. Small ice chips, flavoured with something they like can be refreshing and help to keep the mouth clean and moist. Having a dry mouth can be uncomfortable, so help to keep it moist with sips of drink or swabs of water.

 

Sleeping

Sleep may take up more time. The end of life can be a tiring time as the body weakens and closes down. The person may spend more time sleeping and become uncommunicative, unresponsive, and difficult to arouse at times. Sit with them, gently holding a hand if they want that. Speak softly and normally. There is a reason we are called human beings – being at this stage is far more important than doing.

Just being there for the person dying is often far more powerful and useful than rushing around trying to do things.

Hearing is said to be the last of the senses to be lost, so be careful what you say. Don’t assume that because they have their eyes closed and seem to be asleep that they can’t hear what you are saying.

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Confusion and restlessness

People may seem confused at times. Don’t be too concerned by this. It happens so often it is almost normal. However, if there seem to be hallucinations this needs medical attention. Hallucinations can be very distressing. Remember what you feel like if you have a bad dream? It can be like that for the dying person. So attention to this symptom is important. Make sure you reassure them that they are safe, tell them who you are, and where they are.

It is also common for people dying to say that they have seen someone who has already passed away. This happens so often that it can be assumed to be normal. You do not need to do anything about it unless the person is distressed. This is not a hallucination and rarely is it a reaction to medication. It simply signifies a person beginning a normal detachment from this life, preparing for death. It will not normally be distressing for them to experience this.

The person may make restless and repetitive motions such as pulling at sheets or clothing. These symptoms may be a result of a decrease in the oxygen circulation to the brain and a change in the body’s metabolism. Do not be alarmed or interfere, or try to restrain such movements. Talk calmly and reassuringly with the person so as not to startle or frighten them.

Familiar sounds, children, dogs and especially music may help have a calming effect. Music in particular can have a dramatic, soothing effect.

 

Breathing changes

Another common sign that death is coming closer is a change in the pattern of breathing. Breathing may become shallow, irregular, fast, or abnormally slow. There is a pattern of breathing that is rhythmical, going from deep breaths to really shallow breaths that may seem alarming. Especially if you think the person has stopped breathing altogether.

They may also make a noise when breathing. This may seem like the sound of distress but is usually the vocal cords becoming less effective and nothing more.

Changing breathing patterns are very common for a person nearing death and usually is a sign of decreased circulation in the brain.

Accompanying this change in breathing pattern there are often ‘retained secretions’. This happens because the normal clearing system in the lungs doesn’t work so well and secretions build up more easily. The person can’t clear them away so readily.

It sounds like gurgling sounds are coming from the chest. These sounds can become loud and distressing to hear but again they are normal. The doctor may give medication to try and dry this up but it isn’t always necessary. Imagine the noise you make when drinking the last drop of liquid from a glass with a straw. A lot of air and not much liquid. That is similar to what is happening here.

It is more distressing to those listening than to the patient. Raising the head of the bed or changing position can make it less problematic.

 

Colour changes

As the circulation slows down, the person’s arms and legs may become cold, hot, or discoloured. You may also notice a change in colour round the lips. This is normal and a sign that the circulation is preserving essential organs until the end and slowing down.

 

The last hours or days

Human nature being what it is, most people will try to ‘hang on’ for as long as they can. Life can become a struggle. Fighting the physical changes cannot go on forever so at some point it often helps for you to be able to say to the person that they can let go. If you are able to, it is often helpful to reassure the person that those left behind will be okay, and that it is alright for them to go.

The ability to do this can be a great gift to the person who is dying. At the same time, it is important to say goodbye. You can say this in words or just lie close by, holding a hand or stroking their head gently. It is normal to cry so don’t apologise or try to hide your tears.

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The time of death

It is important to know what happens at the time of death: Breathing finally stops, no pulse can be felt, the person cannot be aroused, the eyelids may be partially open with the eyes in a fixed stare, and their mouth may fall open as the jaw relaxes. Everything is quiet.

You will normally have warning that this time is coming, so be as prepared as you can be. Contact the nurse or doctor and they will help by telling you what to do next and how to do it. Contacting the funeral director before this time is really helpful as they will guide you through all the processes you need to go through.

If you have any concerns about any aspect of this process, please ask your doctor or nurse. They have been through this many times before and will be valuable guides. Remember: Ask for help. No one will think badly of you for doing so.

Remember that you also matter in all of this. Take care of yourself. Eat, drink and exercise when you can, and try to sleep. It can be an exhausting time but also a great gift to someone to care for them in their last days or weeks of life.

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Managing your fatigue

Fatigue is a feeling of extreme tiredness and lack of energy.

In people who are well, fatigue is often resolved by a good night’s sleep. But when you are ill, this may not be the case and you may wake in the morning feeling just as exhausted as you did when you went to bed. It can be very difficult to explain to those around you why you feel so tired despite rest and sleep.

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Signs of Fatigue

  • Feeling as if you have no energy and could spend the whole day in bed
  • Feeling irritable and being unusually short tempered with family and friends
  • Difficulty completing simple daily tasks, such as washing and dressing
  • Shortness of breath on light exertion
  • Difficulty concentrating
  • Not enjoying the things you usually do, such as walking, reading or socialising with friends

It is not always possible to know what causes fatigue or why the symptoms may persist. But listed below are some common causes.

Common Causes

  • The body using energy to fight disease
  • Treatments such as chemotherapy, radiotherapy, surgery and medications
  • Immunotherapy in particular can cause fatigue that stays long after treatment is complete
  • Disturbances in eating and sleeping habits
  • Fatigue can be a symptom of anxiety or depression that accompanies illness
  • Prolonged inactivity; reduced fitness
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Advanced illness itself may cause fatigue due to

  • Psychological stress
  • Pain
  • Medications having a sedative effect
  • Symptoms of severe illness such as vomiting and breathing difficulties
  • Lack of nourishment. Efforts to eat and drink well may be only partly successful

What can be done to help?

  • Tell your nurse or doctor. There may be something they can do to help and they may need to check for illnesses such as anaemia. They may also ask for permission to refer you to a physiotherapist or occupational therapist as they can offer more specialist advice.
  • Rest and sleep: Try not to rest and sleep too frequently during the day. Try to go to bed at the same time each night and make sure your bed and pillows are as comfortable as possible.
  • Activity: try to stay as active as you can without doing too much. You may feel as if you have no energy, but some moderate exercise such as walking around the garden will improve your circulation and this may help you to feel better.
  • Nutrition: drink plenty of fluids and eat a well-balanced diet. Energy-giving foods are also important. So try to eat food that is high in energy (for example potatoes or sweet food). If you cannot face normal-sized meals, eating little and often may be better for you.
  • Look after yourself: relaxation may help with feelings of stress and tension and may help to increase energy levels. If you are finding it difficult to manage, tell your doctor or nurse.
  • Plan ahead and establish your priorities. Set yourself realistic, achievable goals.
  • Having a warm drink before bed may help you to sleep (avoid caffeine).
  • Consider accepting help when it is offered and make sure you spread activities over a period of time rather than trying to do them all at once.
  • Place chairs around the house so you can sit and rest when you need to.
  • Have a shower every other day and on alternate days, or have a wash at the bathroom sink – this often requires less energy.
  • Tell your family and friends how you are feeling. This will also let them know you may not be able to do all the things you are used to doing. This will allow them to help you with activities and jobs that you would still like to do.

Always remember that fatigue is a very real symptom that requires attention. It may be more difficult to quantify than other symptoms, but it is important it is not ignored. There are a variety of ways to manage and address fatigue that can significantly improve the quality of your life.

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Managing your pain with a life-limiting illness

If you have a life-limiting illness, your doctor will give you information and talk to you about your pain and how to manage it, including:

  • The causes of your pain
  • How your pain affects you (e.g. onset, timing)
  • What treatment works and what doesn’t (including medicines and non-drug measures like massage, heat, cold etc)
  • Effect of medicines including breakthrough analgesia (e.g. onset and duration of effect; when to take them)
  • Side-effects of medicines and how to prevent or manage them
  • Any safety concerns (e.g. mixing with alcohol, driving)
  • Ways to ensure you have adequate access and supply to prescribed drugs
  • How to work with your doctor and nurse and achieve the best pain control possible (e.g. the importance of reporting rather than concealing pain, side-effects and other concerns about medication)
  • Common attitudes and beliefs that may prevent people with cancer receiving effective pain control (e.g. fears that opioids are addictive and used only at the end of life, and that patients will develop tolerance overtime requiring dose escalation)
  • When to seek help (e.g. if vomiting and unable to keep down fluids for one day, bowels not open for 3 days, new pain, change in pain or pain not relieved by medication, difficulty arousing the patient from sleep easily during the daytime, confusion, difficulty accessing the medications).

If you need more information on any of these matters, do ask your doctor.

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Developing a cancer pain plan

An important step in managing your pain is developing a cancer pain plan with your caregivers, and staying on top of the pain.

The first step in developing a plan is talking with your doctor and/or nurse about your pain. You need to be able to describe your pain to your family or friends, too. Ask them to help you talk to your doctor and nurse, especially if you are too tired or in too much pain to talk to them yourself.

One thing that often helps considerably is to be able to use a pain rating scale.

Using a pain scale is a helpful way to describe how much pain you’re feeling. Try to give each pain a score on a scale of 0 to 10. If you have no pain, give it a 0. As the numbers get higher, they stand for pain that’s getting worse. A 10 means the worst pain you can imagine. For instance, you could say, “at the moment my pain is a 7 on a scale of 0 to 10.”

You can use the rating scale to describe:

  • How bad your pain is at its worst
  • What your pain is like most of the time
  • How bad your pain is at its best
  • How your pain changes with treatment

You can use the rating scale to describe:

  • Where you feel pain
  • What it feels like (for instance, sharp, dull, throbbing, gnawing, burning, shooting, steady)
  • How strong the pain is (using the 0 to 10 scale)
  • How long it lasts
  • What eases the pain
  • What makes the pain worse
  • How the pain affects your daily life
  • What medicines you are taking for the pain and how much relief you get from them

Making the most of your pain control plan

To help make sure your pain control plan works well:

  • If you’re taking pain medicine on a regular basis (around the clock) to help control pain that doesn’t go away, take it when it’s time to take it – even if you’re not having pain.
  • Don’t miss out doses of your scheduled medicine. It is harder to ‘catch up’ if you lose control of the pain.
  • Use your short-acting breakthrough pain medicine as instructed. Don’t wait for the pain to get worse – if you do, it can be harder to control.
  • Be sure only one doctor prescribes your pain medicine. If another doctor changes your medicine, the two doctors should discuss your treatment with each other.
  • Don’t run out of pain medicine. Remember that prescriptions are needed for almost all pain medicines – usually they can’t be ordered over the phone and chemists don’t always have them in stock. It can take a few days to get the medicine, so give yourself time for delays.
  • Store pain medicines safely away from children, pets, and others who might take them.
  • Never take someone else’s medicine. Medicines that helped a friend or relative may not be right for you.
  • Do not use old pain medicine or medicine left over from other problems. Drugs that worked for you in the past may not be right for you now.

Keep a record of your pain

You may find it helpful to keep a record or a diary to track details about your pain and what works to ease it. You can share this record with those caring for you. This will help them work out what method of pain control works best for you.

Pain control isn’t just about medication. Non-drug treatments may be used to treat pain along with pain medicines. They might also be used alone for mild pain or discomfort. Some people find they can take a lower dose of pain medicine when they also use non-medical treatments. You may need the help of other health professionals – social workers, physiotherapists, occupational therapists, psychologists, or others – to learn to use these techniques. Each of the professionals in the team caring for you will have something to add. Your family and friends can also help.

For more information, see this article.

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How to make end of life decisions

If given a choice, most of us would want a “good death.” But what that means is all too often left up in the air until a crisis strikes or the sick person is no longer able to communicate his/her wishes. When that happens, spouses, adult children, siblings and others find themselves in the unenviable role of surrogate decision-makers. It can be very hard to try and work out, sometimes with very few facts and under very emotional circumstances, what people would have decided to do if they were able to choose.

An effective way to plan for the end of your life is to develop an advance care plan in conjunction with your doctor or nurse. It is preferable to do this before you get sick. But if you find yourself in hospital or any other care setting, it isn’t too late to do this, it just takes a bit more thought. Ideally, you would discuss your preferences for life-sustaining treatment with your family before you are seriously ill.

If you can, it is wise also to formally appoint an enduring guardian and let them know what your wishes are. Over-riding all of this you should seriously consider writing an advance care directive.

The critical element for all of this is to have the conversation about it all with those who love you, and of course while you still have the ability to make decisions.

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Certain specific things to consider

What is the goal of care – that is, what are you hoping the healthcare team looking after you will achieve? Ask them to be specific.

Treatments at the late stage of illness are aimed at reducing symptoms, never at shortening life or hastening death.

Some strong painkillers may make people sleepy – don’t be concerned by this. If you ask to not be sedated, then your care team will respect that.

Using drips or other interventions to provide fluid and food has its own possible disadvantages and discomforts. For example, those related to having tubes in your arm or elsewhere. Consider carefully what you want the goal of this sort of treatment to be.

Talk with your family about the possibility of being resuscitated using cardio-pulmonary resuscitation. You will almost certainly be asked about your views on this in the late stages of disease.

If you have an advance care directive, make sure everyone knows where it is.

In some circumstances, for example where the patient’s condition suddenly deteriorates and their wishes are not known, a treating doctor may provide medical treatment without either consent, if the treatment is necessary as a matter of urgency. Such situations might be to: save the patient’s life; prevent serious damage to the patient’s health; or alleviate significant pain or distress. If you make your wishes clear beforehand then this situation will not arise.

In summary, the most important thing to do is to have a conversation with your family and loved ones so you are all quite clear what your wishes are. Of course those wishes may change as circumstances change but having the first conversation is the hardest.

Further information about advance care planning can be found here.

The department of Internal Affairs has launched a website to help guide people facing the loss of a loved one.

Te Hokinga ā Wairua - End of Life Service' has been developed with the help of specialists such as the Funeral Directors Association of New Zealand and tells people about their options and requirements in the first days, weeks and months following a death.

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Preparing for death

Preparation is Key

This time is much easier for everyone if you can prepare in advance. Try to be as organised as possible.

Firstly, make sure you know where to find important documents. They may be stored with a lawyer, at a secure document storage facility, or in a safe place in the house.

Key Documents

  • A copy of your Will
  • Any instructions about the distribution of personal belongings not covered in the Will
  • Your birth certificate
  • A list, including contact details, of organisations and people to notify if anything happens
  • Instructions on where all your property and investments are and who to contact about them
  • Information about any online accounts you have (e.g. social media accounts) which you want shut down when you die
  • Details of your insurance policies
  • Important documents such as land titles and mortgage agreements
  • Any other documents that may be important to your family, e.g. the original manuscript of a book you have written
  • Any wishes relating to funeral arrangements
    • A list of friends you want at the funeral and their contact details
    • A letter to individuals or a recorded message for the funeral
    • Your wishes for the funeral if they are not detailed in your Will

What are some of the things that need to be done after a family member dies?

A doctor must sign a certificate that confirms the death. Funeral arrangements cannot be completed until the doctor has signed and issued this certificate, generally called a Medical Certificate of Cause of Death. The funeral company can then take the person who has died into their care.

The funeral director in charge of the funeral arrangements will generally collect all the information needed for registering the death and send it to the relevant state or territory government office. The funeral director may also help with things such as newspaper notices, flowers and religious services. Read more about who to contact on the Funeral Directors Association of New Zealand website

If a funeral director is not involved with the funeral arrangements, the person who manages the final arrangements for the deceased is responsible for registering the death. A family member or a funeral director needs to register the death, including obtaining a medical certificate or Coroner’s Authorisation (before the body is buried), organise the funeral and notify the other family members and close friends of the deceased.

This is a helpful resource for this area.

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What is palliative care?

Palliative care is a type of medical practice that has grown up over the last 50 or so years. It’s concerned with the care of seriously ill people, where cure is not possible.

It is an approach that focusses on improving the quality of life of patients and their families facing the problems associated with life-threatening illness. It’s about providing relief from pain and other distressing symptoms.

It is important to know that palliative care affirms life and that dying is considered a normal part of all our lives. It is also important to emphasise that palliative care aims to neither hasten nor postpone death.

The aim is to manage each situation by being careful about identifying and assessing symptoms, whether they are mainly physical, or psychosocial or spiritual. The aim is to find out what matters most and to try to focus on that.

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It isn’t just about managing physical things like pain or breathlessness, it integrates the psychological and spiritual aspects of who we are.

It attends to what gives each of our lives meaning and purpose and offers supports to help patients live as actively as possible until their death. It also provides a broad range of professionals who can help the family and important others cope during the patient’s illness and in their own bereavement.

This can’t be done by a doctor or nurse working on their own, it needs a team approach, so a number of different people may be involved at different times.

This may be doctors and nurses but also physiotherapists, occupational therapists, chaplains, pastoral care workers, counsellors and very often volunteers undertaking a wide range of jobs for the family. If needed, most teams will also be able to offer bereavement counselling, if that is needed or wanted.

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Many people think palliative care is just for the end of life and the end of hope. This is not the case. We know now that palliative care can actually make a big impact on how long people can live, and live well.

It isn’t just for the end of life either. If someone has a disease or illness that has no cure then it is appropriate to think about involving palliative care teams at an early stage, even while other treatments like chemotherapy or radiation therapy are going on.

In summary, palliative care isn’t about death – it is about living life right up until the end and making the most of each day that we can.