Dying, death and grief

For some, death comes suddenly and without warning – for instance, because they have an accident or their heart suddenly stops beating. But dying is most often a process that takes place over a longer period of time – for example, when life ends due to old age or a disease like cancer, heart failure or chronic kidney disease. The process of dying can be affected in various ways by different diseases. But there are typical changes that occur in many dying people, regardless of the cause. If you know what changes to expect in the final stage before death, that can help to reduce any fears and create a peaceful atmosphere. It also helps those who are left behind to cope better with the loss of their loved one and find a way to move forward without them.

The dying person gradually becomes weaker. This loss of strength may continue over several weeks, until they become bedridden. Eventually, even eating and drinking become difficult, and at some point the person stops eating and drinking altogether. Their skin turns pale, and their face looks increasingly gaunt.

They sleep a lot. The periods when they are awake – and talk with or listen to loved ones, for example – gradually become shorter and less frequent. Some people become confused or restless during their final phases of consciousness.

Their breathing changes, especially during the final hours of life: It typically becomes shallower and irregular. Saliva (spit) may build up, which often causes a rattling sound when they breathe. They might stop breathing for longer periods. These changes in breathing can be alarming for loved ones, but they’re part of a natural process. They are not believed to cause the dying person any distress – unless there are signs such as sweating, restless movements, a contorted face or tears.

Eventually, their breathing stops completely, and their heart stops beating. Even if individual cells in their body are still alive, their organs and brain stop functioning once the supply of blood is gone. The person is then dead.

Because the blood is no longer being pumped around, it pools in the lower parts of the body. That can be seen as reddish-purple areas of skin (livor mortis), often on the back and legs, about half an hour after death. A little later, the muscles become stiff. Known as rigor mortis, this stiffness gradually goes away after about one or two days. The gut bacteria are still active, so gas can build up in the bowel. Because of this, you may still hear bowel sounds after the person has died, and they may even have a bowel movement (poop).

Although there’s plenty to get on with after a loved one’s death, you can stay at their bedside for a little while, in a peaceful atmosphere. That will give you time to be with them, to grieve and to say goodbye. In Germany, you can keep the body at home for 24 hours if you like – to allow family members, friends and acquaintances to say their goodbyes. In some German federal states, this is possible for an even longer time. If the person dies in a hospital or care home, there is often an opportunity to say goodbye in peace there too. Their body may also be brought home for this purpose.

People who have a serious illness that can’t be cured are given palliative care. The goal is to keep their quality of life as good as possible for as long as possible. It involves a combination of nursing care and medical care, as well as psychological, social and spiritual support – taking into account the person’s wishes and those of their family. Palliative care can start while the person is still leading an active life despite their illness. The aim here is to relieve any symptoms and keep their strength up so that they can still have a good day-to-day life for as long as possible.

If it becomes clear that the person probably only has weeks or days to live, difficult treatments and more involved testing are stopped. Then the aim is to relieve symptoms and ensure a dignified end of life through tailored nursing care and psychological support – for loved ones, too.

Generally speaking, medications that were taken for a long time aren’t needed in the final stage of life. Many people then make the decision, together with their loved ones and their doctor, to stop taking them. The main focus is then to relieve things like pain, shortness of breath, nausea and anxiety. Stronger medicines like morphine are often used for this purpose. These can be taken as tablets. If swallowing becomes difficult towards the end of life, they can also be given using a patch on the skin or by injection. Some people are given sedatives, such as benzodiazepines. Antidepressants can also be helpful.

The type and dose of medication will vary from person to person, depending on things like whether they are agitated or anxious during the final stages of life.

Medications for nausea and constipation can be used for digestive problems. Feeling less hungry or thirsty – or not wanting to eat or drink at all – is a normal part of the dying process. Feeding tubes or drips (infusions) are generally not used, even if the dying person is barely eating or drinking. The team provides other kinds of care instead, such as keeping the person’s mouth moist with special mouthcare swabs. They may also give the person food that is pleasant in this situation, like cooled pieces of fruit. To prevent pressure sores (bed sores), the team uses small cushions and gently changes the person’s position in bed regularly.

Loved ones may also be affected by the situation and develop physical symptoms – like trouble sleeping, loss of appetite or back pain. Then the palliative care team supports them, too.

Please note that some of the following information describes the situation in Germany specifically. You may find that things are different in other countries.

There are various ways to get palliative care:

If someone wishes to die at home, their loved ones usually provide most of the care. In Germany, it’s possible to get time off work for this – up to several months, depending on the circumstances. You can ask your health insurer for any medical aids you might need, such as a nursing care bed, commode chair (toilet chair) or wheelchair. These things can usually be delivered within a few business days. You can get advice by calling the hotline for family caregivers (Pflegetelefon) run by the federal ministry responsible for senior citizens.

Many families also use a home nursing service (ambulanter Pflegedienst) for help with things like bathing in the morning and evening. Some of these services focus on caring for people who are dying. Family doctors often have extra training in palliative care, too. Specialized outpatient palliative care services (spezialisierte ambulante Palliativversorgung, or SAPV) are available as well. These services are provided by a team of healthcare professionals who often work together with the family doctor. You can call the SAPV team at any time – for instance, if the dying person suddenly becomes very restless at night. The team can assess the situation and give medicine to reduce anxiety and pain, for example. They can also show loved ones how to give the medicine if needed. You can get emotional support and spiritual care at home, as well.

These outpatient services can also be used by people who live in a senior living facility or nursing home.

Moving into a hospice may be an option under certain circumstances – for example, if the required care is very intensive and can no longer be given at home. This also allows the dying person to spend more quality time with loved ones because the focus isn’t on providing care.

A hospice offers round-the-clock care for people who are dying. Along with nursing care and medical care, they provide emotional, social and spiritual support too. You can eat meals together, play games, talk or just be together in a calm and caring setting. Hospices usually only have a small number of beds. You may not get one on short notice, so it’s best to apply for a place there as early as possible.

If the dying person wants to stay at home until the end, there are various local support services, depending on where you live in Germany. One option is hospice day care (Tageshospiz). This involves going to a hospice during the day and being in your familiar surroundings in the evening, at night and at the weekend. Alternatively, you can make use of outpatient hospice services (ambulante Hospizdienste). Then a palliative care volunteer comes to your home for a few hours per week, for example, in addition to nursing care services and family doctors. They don’t only support the dying person. Their support also allows family caregivers to keep working at their job, run daily errands or simply rest and recharge their batteries.

Some hospitals have a special palliative care unit. These units generally have a more homely feel than standard hospital wards, providing a pleasant setting for the final days of life. If you have a terminal illness, you can receive care there from the time you’re diagnosed and continue to go for treatment as the condition progresses – for example, to relieve severe symptoms such as pain, nausea or shortness of breath.

If needed, the palliative care unit also provides support during the process of dying. Loved ones can normally stay in the room around the clock.

End-of-life care is usually available on every hospital ward. If you’re on a general ward, a palliative care team (Palliativdienst) – made up of staff from various fields – can offer advice about palliative medicine and provide further care.

Special facilities, such as children’s hospices, tailor to the needs of children and teenagers with a terminal illness – as well as the needs of their families.

The costs of outpatient services, medication and nursing supplies are usually covered by health insurers and long-term care insurers (Pflegeversicherung). They also cover the costs of care in a hospice or a palliative care unit. You may have to pay a part of the costs of some supplies, just like with some medications.

If you want extra services like round-the-clock home care, you have to pay for them yourself.

What do you want the end of your life to be like? It can be helpful to think these things over and to make arrangements, even while you’re still young and healthy. In a living will (Patientenverfügung), you can specify what kind of medical and nursing care you would want if you reach a point where you can no longer make decisions for yourself. With a health care proxy (Vorsorgevollmacht), you name one or more people who would be allowed to make these and other important decisions on your behalf. It is also a good idea to give someone (like a family member) power of attorney over your bank account, making sure it’s still valid after your death. You can contact your bank to find out how to set this up.

You can plan other things for the time after your death, too. In a last will and testament (Testament), you can determine who will receive your property and money, for example. That way, you can provide financial security for certain loved ones if that won’t automatically happen under the law of inheritance. This is important for unmarried couples, for instance.

Some people think about how they want their funeral to be arranged, and write down their wishes. That can be reassuring – for example, because you know that you will be buried in line with your faith. It can also make it easier for loved ones if you write down your preferences or even make arrangements in advance.

You can also specify how to pass on your digital assets – such as photos and access to email accounts and social media accounts: For example, should a certain named person be given access? Or should all content be deleted if the provider receives a death certificate or if the account has been inactive for a certain period of time?

Even if it can be hard to face, there are a number of things that need to be done after a loved one dies.

After carrying out a medical examination, the doctor fills out an official document (Totenschein) to confirm that the person has died. Usually, the funeral home sends this document to the local registry office (Standesamt), where the official death certificate (Sterbeurkunde) is then issued. A death certificate is an important document. You need it for the following things, for example:

• Canceling or transferring the dead person’s insurance policies, contracts and subscriptions – such as their life insurance, pension plans, liability insurance or car insurance – as well as payments for rent, electricity, water, gas, telephone, radio/TV and newspapers
• Informing the person’s employer that they have died
• Informing the tax office
• Applying for insurance payouts
• Applying for bereavement pensions (Hinterbliebenenrente)

You’ll also need the death certificate in order to arrange a funeral – which is mandatory in Germany. The funeral is arranged together with a funeral home. Their prices may vary a lot, so it can be a good idea to compare offers from different ones. The costs will also depend on your individual preferences and the type of funeral (for example, a burial or cremation). People who don’t have much money can, under certain conditions, apply to have the costs covered by the social welfare office (Sozialamt).

To arrange a religious funeral, you should also contact the church or congregation. Alternatively, you can hire a civil funeral celebrant to speak at a non-religious ceremony.

The local registry office (Standesamt) notifies the probate court in the place where the person lived before they passed away. The probate court then starts the probate proceedings and, as part of that process, also reads the person’s will. If there’s no will, the usual inheritance laws determine who is to inherit what. Anyone who is listed as an heir can decide for themselves whether they wish to accept the inheritance. To do this, you must apply for a certificate of inheritance (Erbschein) from the probate court (Nachlassgericht). If you decide to reject the inheritance, you generally have six weeks to do so. Then you no longer have the right to enter the person’s home or keep mementos (even those that aren’t worth much money) without the consent of the heirs. If you reject the inheritance or apply for a certificate of inheritance, you have to pay for that. The fee is based on the value of the inheritance.

You also need to deal with the financial affairs of the person who died. Banks must be notified of the death using the appropriate form or by showing them the death certificate. They will then let you know what documents you need so you can access the accounts – for example, a power of attorney or a certificate of inheritance. Before closing an account, you should cancel all contracts associated with it. If the person was a taxpayer, the heirs must file a tax return on their behalf.

If you want to clear out the person's home, you can do it yourself or hire a company that specializes in clearing out homes. If the person died in a nursing home, you can read about the steps you need to take on the website of the German consumer advice center (Verbraucherzentrale).

Last but not least, don't forget about the person's digital assets – for example, all data, subscriptions, accounts, and online credit or cryptocurrencies that they have left behind on the internet. Heirs are allowed to access these digital assets. If the person didn't leave a list of login details, you can usually get them from the online provider by showing them a certificate of inheritance or other documents. Some commercial services offer help to manage digital assets after a death. It is important to find out how much this service will cost and remember that they will have access to personal data.

It is also possible to set up an "online memorial" page on the internet, where people who knew the person can share photos or written memories, for example.

The time leading up to death can be hard for the dying person and everyone around them. The person may be sad that their life is ending and they have to say goodbye to family and friends, and to their plans and hopes. They feel many different emotions and have a lot of questions about dying and death. They may be anxious about what comes next during the dying process or after it. They often feel desperate, sad or angry about their fate, or regret certain things they did or didn’t do during their life. These feelings may be mixed with more positive ones, though – like a sense of calm acceptance, the realization that they have lived a full life, or being grateful for good farewell conversations with people who are close to them.

As a loved one of the person who is dying, your grieving process also begins before their death – and then continues afterwards. You might feel many emotions, such as loss, love, gratitude, pain, fear, regret, guilt or even anger. Many people also feel relieved because their loved one has finally been “released” after a long illness, for example. You may experience physical signs of grief too – like pain, nausea, tiredness, loss of appetite or sleep problems.

Children and teenagers grieve in their own way, depending on their age and their beliefs about death. Their feelings may change more frequently and include more happy moments. Children sometimes go back to old habits like thumb-sucking. They often feel guilty because they think that they’re somehow responsible for the person’s death – and worry about losing other family members too.

There are various sources of emotional support and information for people who are dying and those close to them:

End-of-life care is an important part of palliative care. The goal is to help the dying person during their final phase of life to ensure that their death is as peaceful as possible. The exact kinds of support can vary a lot from person to person, depending on their needs and wishes. Like palliative care teams, end-of-life teams are made up of medical doctors, nurses, psychologists, social workers and art or music therapists. They also support loved ones as they grieve and say goodbye.

You can get valuable support from hospice care services (Hospizdienst) too – usually provided by trained volunteers who visit people in hospitals, nursing homes or in their own home. They can help the dying person in various ways, depending on their needs. That may involve keeping them company and talking with them about their feelings and questions – for example: What do they still want to accomplish? Who do they want to talk things out with? Would they like to leave something personal behind for loved ones, like letters or audio recordings? How can they deal with their fear? What comes after death?

The hospice care providers also run small errands and offer advice on organizational matters. They are there for loved ones, too: giving advice on how to support the dying person, preparing them for the loss to come, and helping them through this difficult time and beyond.

Some hospice care teams focus on supporting certain groups of people – like children or teenagers who are dying and their families, or families that are facing the death of a parent. Hospice care is usually free for those who need it.

You can take end-of-life support courses to learn how to help a person who is dying, what decisions need to be made, and how to say goodbye in a meaningful way. In Germany, these courses are called “last aid” (letzte Hilfe) courses. Some are especially for children and teenagers. The courses usually aren’t expensive, and sometimes they’re even free.

Many people find religious support helpful, too – like pastoral care from a church. It allows them to examine spiritual questions about the meaning of life and death, and provides emotional comfort. Religious leaders (or sometimes volunteers) talk with you and can pray on your behalf, bless you or anoint you if you wish. You do not need to be religious to receive this care. Christian pastoral care is available in most hospitals and nursing homes in Germany. In some cases, other religious communities offer pastoral care there as well. You can also contact your church or congregation directly.

The Catholic and Protestant churches in Germany offer a counseling service (called Telefonseelsorge) by phone, chat or e-mail. On their website, they have a list of counseling hotlines for people who speak other languages too. Other religious communities and non-church groups in Germany have similar offers – such as the Muslim pastoral care hotline. The “Nummer gegen Kummer” counseling hotline supports children and teenagers, their parents and other trusted people in their lives.

Even though grief is painful, it's a normal and important part of learning to live with a loss. So it’s important to give your feelings space and not suppress them. Various grief counseling services offer an opportunity to express your feelings in a safe space, sort through your thoughts, and receive understanding and support. In open or closed bereavement support groups, people who are grieving usually meet with bereavement counselors and work through their grief together in a variety of ways – such as through talking, relaxation exercises, walks, painting or other creative activities. You can also go to a grief café meeting (Trauercafé) – these groups are generally more open in nature and you can take part more flexibly. One-on-one bereavement counseling is also an option, as well as special programs for children and teenagers, parents who have lost a child, and young widows and widowers. Churches, charitable organizations, hospice associations and hospitals can inform you about local options. Funeral homes can help here, too. You can also search for suitable options on the website of the German Federal Association for Grief Counseling (Bundesverband Trauerbegleitung). Costs can vary widely, depending on the provider and the type of support – and some options are even free.

There are various digital grief support services available online – ranging from grief counseling via email, a chat or app to online seminars about grief. Some of these offers are also aimed at specific groups of people. In general, it’s a good idea to make sure that the grief counselors have appropriate training — preferably in line with the guidelines of the Federal Association for Grief Counseling.

Support groups can also be a way to connect with people in similar situations and support each other. There are groups for people in specific situations too – such as for families who have lost a child, widows and widowers, or those left behind by people who have taken their own lives.

Many people find it difficult to talk about dying and death. They might be afraid that – or notice that – others would rather not talk about it. But it can be hard to face such a difficult topic alone. You will usually find that people are supportive and understanding. Once you've passed that initial hurdle, it may become easier to approach the people you think will be most helpful. Or you can make use of one of the resources mentioned above.

As a loved one, it’s often hard to know what to say. It can be helpful to set aside your own views and ask the dying person questions – like what’s on their mind, do they have any worries, and what do they need right now? There’s often no need to say much. It can be more important to let them know that you’re by their side, that you’re listening to them, and will get through this difficult time with them. Sometimes they might just be happy to talk about something completely different and take their mind off things. But it's not a good idea to try to comfort them with false hope.

Talking to children and teenagers about death can be especially difficult. Still, you shouldn't shield them from the truth or wait too long to tell them – otherwise, the situation will confuse them, and they'll come up with their own explanations, which could be even more distressing. Depending on their age, children have different beliefs about death, which you should talk to them about. There's no need to explain too many details, especially with young children. The situation should be explained to them honestly, though, and they should be given plenty of opportunities to ask questions. Information about how the dying person will change – and also what will remain the same – will help them to be more prepared. Showing your own feelings can encourage children to show theirs as well. That lets them know that it's normal and perfectly fine to feel sad. It is also important to make it clear that the child isn’t to blame for the person’s illness or their death.

Many people who are grieving receive the most support from those around them in the first few weeks after their loss. But grief often gets worse after the funeral and other organizational matters have been taken care of, when you have more time to yourself again. The emotions that arise – and when they arise – vary from person to person. Factors that can play a role here include your relationship with the person who has died and your past experiences with loss and grief.

The grief might never go away completely. It’s normal to keep thinking of the person you lost – for instance, in difficult situations or at certain times, like on birthdays, the anniversary of their death, or on special occasions. Thinking of them can bring up distressing feelings, but doesn’t always. Over time, most people manage to find a place in their lives for the memory of the person who has passed away, while at the same time allowing their grief to move into the background.

Some people need professional help to cope with their loss, though. There’s no clear line between “normal” grief and complicated grief, sometimes called “prolonged grief disorder (PGD).” Signs of complicated grief may include the following:

• You feel as though you can't cope with your grief on your own.
• Grief affects your daily life and/or work for a long time.
• You feel numb, or as if you've been in a state of shock for a long time.
• You get sick more often.
• Certain problems started or became worse after the loss, such as depression, anxiety, panic attacks, eating disorders or dependence on alcohol or medication.

In situations like these, it’s a good idea to seek professional help.