THE DYING PROCESS
Death is the natural end of our lives, an ordinary and sacred experience. Being aware of and able to talk about death as a part of life can help you live more fully. Talking about death does not make it happen, just as not talking about it cannot stop it from happening. Being more informed and prepared may empower you to hold an attitude to death that creates greater freedom.
Adjusting to the understanding and reality that you are nearing the end of your life, and your death is coming, is a unique experience for everyone. You may want to create some time in your life to think about what needs to be in place if you died tomorrow. Beginning the process of considering, recording and communicating these things can be an empowering, kind and life-affirming act.
PREPARING FOR DEATH
Death can be sudden or expected, coming in its own time and its own way. A dying process may take years, months, hours, minutes or be instantaneous. Being prepared covers, among other things, legal, practical, medical, emotional, social and spiritual matters. These areas are often intertwined.
An expected death can offer an opportunity to connect and talk about what matters to you, but in the event of your sudden death, that opportunity is not there. Being prepared is helpful for everyone involved.
Whatever your circumstances, you may want to:
Speak to the person(s) you want to be responsible for carrying out your wishes. Ensure what you are asking of them lines up with their values and beliefs, and they will action it for you. If they are unwilling or unable, this gives you the chance to talk about it and rethink who you need to appoint.
Have as little unfinished business as possible for yourself, your relationships and your professional life.
Convey what you want to happen to your body after you die. What sort of funeral and disposal method you want – burial, cremation or no preference?
Bear in mind the Will is often only read after the funeral, so it cannot be relied on to provide this information.
The dying process can begin long before death actually occurs. Dying happens to your whole being, not just your physical body. All parts of you may experience pain or suffering, and comfort or healing. Your quality of life, medical treatment and pain control are all important matters in this.
Pain control is important, as there is no need to suffer unnecessarily. If you are physically comfortable you can do things like relax into your dying, complete unfinished business, both personal and professional, reflect on your life and your relationships with others and even find new meaning in your life. It may be a time of growth, emotionally and spiritually, for you and others. Your dying is uniquely yours; it is different for everyone and you will probably die in a similar way to how you have lived your life.
You can be active and live your dying, and your responses may change as you move through your process. Talking about things can provide relief or comfort to you and to all those involved.
You could discuss:
Your care needs, as a support network may need to be created.
How you would like to be cared for, to assist your carers and allow for the death experience you want.
Appropriate pain relief, if your priority is to remain as conscious as possible.
Any preference to where you die – at home, in a hospice or a hospital.
You may want to consider your emotions and feelings:
Love – to express your love and to allow others to do the same
Gratitude – to express your gratitude and allow others to express theirs
Forgiveness – to forgive yourself and others, and ask others for forgiveness
Regrets – to express any regrets and allow others to do the same
Saying goodbye – to say goodbye to your loved ones, your possessions, the world and your life, and let others say their farewells to you
Acceptance – that things are as they are and may not be able to be resolved
Discuss with those who may be caring for you to clarify what is really important to you about the environment and atmosphere you will be in. For example, discuss your independence, friends, family, conversation, silence, access to nature, pets, art, photos, music, aromas, candles and lighting.
Your psychological, religious or spiritual needs may also be important, and you should communicate what is required to meet them if this is the case. Share these needs with those around you so they are supported, and they can support you. Access social workers, counsellors, clergy, prayer, meditation, solitude, friends and family, as needed.
Be as honest as you can with yourself and others about what you need to feel comfortable and supported. This may mean finding ways to express or release emotions as they arise. There are people who can help with this. If you need help, ask for help.
Considering and talking about personal things could be new territory and difficult. You may have no experience in speaking about your feelings and thoughts. If this is the case for you, it may be easier to write letters or notes, or you may choose to just make peace within yourself. What you consider and do can be a journey of incredible discovery. It is your life and your death, so it is entirely up to you.
CARING FOR THE DYING PERSON
Being with someone while they are dying can be many different things: challenging, exhausting, heartbreaking, satisfying, expanding, joyful or liberating. Any or all of these, and more. Every death is a unique and personal experience for everyone involved.
Most people want to live, and will do all they can to stay alive, but their illness or condition may deteriorate, and they progress into their dying process. This can begin a period of more intense emotions and their care may become more demanding. The situation could need to be reconsidered and new decisions made, with advice and information from loved ones and health professionals. Most people will die as they lived; someone who has always shared openly is likely to continue to do so, just as a person who has been stoic, private or independent throughout their life, is likely to continue to behave this way. This is a time when religious or spiritual beliefs, fears and myths may help or hinder.
There are many places to die – at home, in hospital, in palliative care or hospice, or in an aged care facility. A palliative care facility or a hospice is a place just for people who are dying. A hospital may have a specialist palliative care ward or they may only have general wards.
Try to create an appropriate space and atmosphere. Check in with the person – their sensitivities and needs are paramount. Most hospitals will accommodate things like soft music, decoration, photos and favourite or meaningful things in the room, as long as they are not obtrusive or in the way.
Hospital and Hospice visitors are generally permitted to stay around the clock and are often allowed to sleep in the room. The dying person may or may not be able to speak, so someone may have to gauge who, how many and for how long people may visit. Common sense and kindness will be needed as death can fascinate and repel at the same time. People often want to be there for as little or as much time as they can. This happens for a range of personal and complex reasons.
It is also kind to allow the dying person some quiet time, with no-one, or just one quiet person in the room. Silence and solitude can be a great gift to give. Imagine yourself ill – not even dying – with a room full of people, often talking to each other, being there all the time. It can be intrusive to your peace of mind. It is important to use your knowledge of the dying person to make these decisions. If you need to take time to sort anything, do try, but remember it is their journey; you cannot always make it happen as you want.
Some of the elements involved are:
Medical team – attending doctor/palliative care doctor, community nurses/palliative care nurses, health care providers, social workers, etc.
Community team – primary carer, family, friends, neighbours, sport and social groups, etc.
Documents – AHCP, EG, POA, Will, Plans, etc.
Environment – a quiet space, suitable room, soft lighting, toilet, bath or shower access and signs to inform or limit visitors.
Equipment – bed, hospital bed and bar, pillows and light bedding, music machine, fans or air-conditioner, chair, walker, wheelchair, commode, toilet and shower seat, bowl and toiletries, gloves, pads, hot water bottle, internet access to research and receive bulletins that inform and to communicate, a bell, communication book, contact list, medication list, photos, altar, or other personal things. Chocolate, cigarettes or alcohol may still be part of the person’s life.
Some signs of the body shutting down are:
Less or no desire to eat, as the body does not need to be nourished; less or no desire to drink, as it becomes too difficult to swallow; therefore, little or no faeces or urine.
Cool, moist or mottled skin, continuous sleeping, rhythmic periods of not breathing and rattle-sounding breathing.
Did you know you can do any of these things?
Keep, care for and keep cold a body at home
Wash, prepare and dress a body yourself
Bury in a shroud without a coffin
In some states, be cremated in a shroud
Build and decorate your own coffin (must meet certain specifications so it can fit in the cremator or grave and be weight bearing)
Cardboard coffins are legal
A coffin can be lined with a soft absorbent liner, rather than plastic
Drive a body in your own vehicle from a home or hospital, to the funeral and crematorium or cemetery
These things are all possible and nothing new; rather, they are the way things were traditionally done.
If you want to care for someone so they can die at home, consider carefully your willingness, ability and support systems; the practical as well as the emotional. It can be a challenging time, as well as stepping up or becoming aware of new aspects of yourself. Sometimes the burden of physical care doesn’t allow for emotional care. Consider honestly whether you want to do it, and whether you can do it.
These decisions are individual and must be made in the context of individual circumstances. There is no right or wrong choice, and even though the person may want to die at home, it may be too difficult or impractical. Do not take on caring for someone out of guilt; you can only do what you are capable of.
END OF LIFE, THE MOMENT OF DEATH
If you have been caring for someone in their dying, then their end of life may be gradual and not as shocking as it could seem right now. Death can also come suddenly and catch you unaware; it is often when everyone has left the room, even for a moment.
The signs of approaching death may be a slowing down of the body's functions, a gradual or lesser interest in external things, like the world, politics, religion, community, friends and even family. They may be with their own thoughts and feelings. Check in with them.
If it is true or appropriate, assure them of your love, presence, gratitude and of your ongoing well-being. It may or may not be appropriate or you may or may not want to kiss, touch, hold hands, say goodbye, speak, be quiet, cry, go outside, leave, carry on as normal and be with your own partner or family.
Those accompanying the dying bring their own lives into this moment. It can be anything and everything: a time out of time, many emotions – sad, fearful, anxious, excited, anticipatory or relieved. These, and others, are all common feelings. Feel it all and discuss them if appropriate, but remember you are there to accompany the other person.
Don’t let your emotions overwhelm the situation.
EXPECTED, SUDDEN, OR UNEXPECTED DEATH
As we all know, death is certain, although the time and place are uncertain. Sudden or unexpected death can occur from illness, natural causes, accidents or someone killing themselves. Sometimes the body does not appear until sometime later, or the circumstances may be unknown, or the body may never be located. Sudden expected death can also occur from illness, natural causes or an accident, where there is a delay involved. All call for a different understanding. You may believe or take comfort in the idea that something leaves the physical body at death – a soul, spirit, individual essence, energy or consciousness. You may not believe this. What often becomes clear for people when sitting with or viewing the body for a while is that the person you knew is not there; the physical body is an empty shell.
We encourage age-appropriate honesty with children. Do not exclude them, thinking this will shelter or protect them. Be appropriate, be kind and don’t lie to them. Sometimes if they are not told the truth, they can believe they are in some way responsible. They will know something is wrong or out of place. They will feel, process and behave within their own capacity. Help them to do this well.
Once the person has died, the Will is now valid, and the executor of the Will has the legal right to make decisions regarding the body, funeral and disposal, though usually it is the next of kin who make these decisions.
With an expected death, it is not necessary for a doctor to be present. You will keep them informed, but there is no set time that you must notify the attending doctor, usually within 12 hours. If someone dies in the evening or during the night, you may want to just spend extra calm time with their body and call the doctor in the morning, or a few hours later, when you are ready.
With a sudden or unexpected death, there may be additional shock, distress or trauma for you. In some cases, you may be notified by the police. Prepare yourself by imagining this possibility.
If you discover the body, try to stay calm, take some deep breaths, take hold of something, sit or kneel down. If you feel the need or are able to, check for signs of life, such as a pulse, pupil response and temperature. If there is a possibility to resuscitate them, attempt CPR or call an ambulance, and try to stay as calm as you can. If they are clearly dead and unable to be resuscitated, you may just want to be still. This is a time and an experience you will only have once. Consider what needs to happen next. Take some time to be with your own feelings and the reality of the situation. This may be minutes or even hours. Continue to try to stay as present as you can.
Do not pick up the phone until you are ready. Depending on the circumstances, you may choose to call loved ones, a doctor, an ambulance, the police or a funeral director. Once this course of action is taken, it can be difficult to stop it. In a short amount of time, you could find the place full of strangers asking questions, and the body whisked away. You may want to delay this until you have said your goodbyes and you are ready to deal with this next stage.
If a person has not seen a doctor in the previous three months, or they have had an operation in the previous three months, an autopsy may be required. If the cause of death needs to be determined, the body may be taken by ambulance or funeral director to a hospital morgue and undergo an autopsy. This may take days or weeks to occur. In some cases, the family may be given a choice, and can request no autopsy.
An autopsy is a procedure where the body is surgically opened by the Coroner. The organs are removed and examined to work out the cause of death and usually placed back in, and the body is stitched back up. This can involve a cut to the hairline and through the centre of the torso. The body can still be viewed, but we suggest you have someone explain the condition of the body beforehand so that you know what to expect. You could also have someone accompany you for your first viewing, allowing them to leave you as you get used to it and shock abates. You may want to ask for a chair so you can allow the shock to pass through and let your body be supported.
If there has been an autopsy, it is still possible to:
bring the body home
wash and dress the body yourself
sit, be with or hold a vigil with the body
have an open coffin at the funeral
If a doctor has been visiting the person recently and knows the cause of death, they will issue a death certificate, so there is no need for an autopsy. In these cases, it is then possible to move the body from the home straight to the cremator or the grave, with the correct paperwork completed and due procedure followed. However, usually there is a ceremony before or after the disposal.
With an expected death, the person is usually at home, an aged care facility, hospice or hospital. When life is extinct, especially if you have been caring for or attending on them, along with sadness, there may also be relief that their physical or emotional suffering is over. Being with the body after-death can be a beneficial experience. Take time to just be with the body. Do not call anyone straight away, unless you want to. You may want family and friends to come and be there too.
When you are ready, you must notify a doctor to come and a death certificate must be issued.
If you are using a funeral director, preferably chosen in advance, call them when you are ready. They can also organise the doctor. Do not rush; your time with the body is precious and cannot be had again. The funeral director will take the body away to keep it in cold storage and await your further instructions.
Being with the body can be a very beneficial experience. If you want to keep it at home, it is legal in NSW and some other states to do so for up to 5 days. This is quite a long time. Often people will keep the body between twelve and forty-eight hours. It is vital it be kept cold (preferably at -5°C), as it will begin to deteriorate otherwise. This can be done with ice, dry ice, frozen containers or a refrigerated cold plate. Cold plates are commonly used in some countries and are being used here more frequently. If you want to do this, find out more in advance so you know what is involved and where to obtain one.
You can also wash and dress the body yourself before it is taken away. This may also include closing the eyes and mouth and watching out for any body fluids (though there may not be any). If you want to do this, find out more in advance so you know what is involved.
If a person is dying in hospital, tell the nursing staff if you intend to spend some quiet time with the body once death has occurred. You can also take the body home and care for it there. This time can be very precious. It can allow you to rest, appreciate and come to terms with what has happened, and see clearly that life has gone. This time cannot be had again.
LIFTING, CARRYING AND TRANSPORTING
Discuss any plan for lifting, carrying and transporting the body with all helpers before going ahead. Confirm everyone is clear, there are enough people, ensure everyone is able and everyone is clear on the route you are taking.
Use a draw sheet to lift the body into the casket, supporting and containing all limbs. Once the body is in the casket, remove the sheet or tuck it under the body. If moving a coffin through a house, do a trial walk through with the empty coffin to make sure you can get it through doorways and around corners. Having people on the other side of doorways is helpful. Finally, measure the space in the vehicle you are using for transporting the casket to make sure it will fit.
FUNERAL DIRECTORS (FD)
It is important to understand the role and purpose of an FD to feel empowered in the consultation when making arrangements. They should assist, guide and empower you, not control or override your wishes, so you can be with your loss and your loved ones and have the best possible experience. A good funeral helps you process the loss at the ceremony itself and it can also mean a healthier bereavement. Remember, the FD are in a service industry to serve you, and you are paying their account.
If you would like, enquire with several FDs until you find the one that suits you. If possible, speak to them before the need is there, so you already have an existing relationship. Ask them to explain clearly the service they offer, what is involved in the process, what they handle, how much they will allow you to do and the costs involved. Take notes throughout the process of questions and answers, as it can be difficult to concentrate or retain details and the conversation. Also, explain to them what you want. You may want to do all of this with loved ones.
Some FDs are small and independent or family businesses. Many, including well-known names, are owned by much larger corporations. They should all have a professional code of conduct. Most will come to your home to discuss the arrangements at your convenience. You may request being attended to by the same person or you may be seen by many different people. In the case of large firms, the body may be taken from a small premise you attend to a large cold storage depot holding many bodies, which may involve transport costs.
A FD usually collects the body, completes the legal paperwork required for burial or cremation, drafts optional death notices, cares for the body and keeps it in cold storage, prepares the body if required, places the body in the coffin, transports the body to and attends the ceremony and transports the body to the burial or cremation. All of these services are legally possible without the aid of a FD.
A FD will charge a fee for their service. Remember, they are a service industry, and are there to give assistance, good guidance and the sort of service that you want. They must also give you a written quote of the costs involved. Don’t feel pressured or intimidated to sign anything until you understand what you are signing, and you are ready.
FUNERAL, ARRANGEMENTS, CEREMONY AND DISPOSAL
Depending on your circumstances, you may want to be prepared, assertive and as empowered as you can be. It is most beneficial to understand what is involved before your need arises. Well considered choices may provide a more satisfying ceremony and experience, meaning no regrets, better memories and a healthier bereavement.
There are costs involved, so you may want to enquire or shop around for a funeral director (FD) before you need one, so the situation is easier to manage and is not so emotionally charged. Don’t be intimidated. Make a list of questions, take notes, discuss your plans with them, and ask them what costs are likely to be involved. Clarify anything you don’t understand. Compare the quality of their service, their prices and whether you like and trust them.
Although most people use a FD, in many states it is also legal and possible to do it all yourself. You can complete all necessary legal paperwork, care for and transport the body, build a coffin and hold the ceremony and deliver the body for disposal.
There is a period of time, post-death and pre-ceremony, when funeral arrangements are usually discussed, ceremonies created, plans made, coffins decorated, eulogies and tributes written, photo boards assembled, slide shows compiled and orders of service printed.
This time is precious and can only be experienced once, so don’t rush. If in doubt, slow things down, so you can consider and create what is right for everyone. Most people assume that the funeral must happen immediately, within three to four days, but legally there is no set time. It can take a week or two, or even up to a month if personal or legal circumstances demand it. Speak to your FD.
During this in-between time, loved ones may also choose to wash, dress, view, sit, be with or hold a vigil with the body. The body can be taken home, which is often beneficial, especially in the case of sudden death. It is an opportunity to come to terms with the shock, to process some initial emotions and feelings, touch and sense the body, and sometimes to realise that the person is clearly gone and their body is simply empty.
If a family member or friend has to travel far to attend the funeral, especially from overseas, it is often helpful to offer them the opportunity to be with the body when they arrive. They have likely been alone with the news, have had to make travel arrangements and been in long transit, so they may need time with other loved ones before the ceremony to experience their loss and the feelings that go with it.
In the case of a sudden death, there will often need to be an autopsy to discover or confirm the cause of death. This can take time – usually between two to five days – and you can inquire to the coroner, or your FD can keep you informed of the process.
In some circumstances, when the body has not been found or is not retrievable, this adds more distress to an already difficult situation. Sometimes in these cases, it may be helpful to still hold a ceremony, so those affected can come together in their shock, to support and connect, and honour and celebrate the person and their next of kin.
Usually, if there is a Will, the executors has the legal right to the body and to organise a funeral, but usually the next of kin makes the funeral arrangements. The person who authorises the funeral is liable for the account. When someone dies, the bank usually freezes their accounts. The funeral account is the only expense paid from the bank account, until probate is granted. If there is no Will, then the next of kin or a ‘person responsible’ usually takes over. If there is no one, the arrangements fall to the State.
A local FD will have the tender for destitute burials. They will take care of the body and disposal, and there will be no input from anyone else.