Terminal care

Terminal care refers to the treatment provided to a critically ill person in a situation where curative treatment has been discontinued. Dying patients are not left to cope with their condition even though the progress of their disease can no longer be influenced.

The aim of terminal care is to provide constant and safe symptomatic treatment that respects your dignity and individuality. Terminal care also takes into account patients’ loved ones.

The decision to stop curative treatment is made by a specialist physician. Transferring to terminal care requires a referral from the physician handling treatment.  Terminal care can be provided by home nursing or a hospice.

Where is terminal care given?

Care for patients approaching death can be arranged at their home, at a health centre or in hospital.

When terminal care is given at home, family and friends take care of the patient’s basic needs. Medical care is done by home-based nursing. Where necessary, patients may have assistive equipment at home, such as hospital beds and pain pumps. Home based care requires that a doctor and home based care nurses make a care plan concerning what to do in different situations. Even severely debilitated patients can be cared for at home.

Home nursing can be eased by day hospital services, for example those provided by the Terhokoti Nursing Home in Helsinki. Patients are able to go to the day hospital on a weekly basis to meet other patients, nurses and doctors. This gives the family members or friends looking after them a chance to rest.

If home nursing is not possible, you can receive terminal care in a ward at a health centre, hospice or hospital. Many patients transfer to ward care when their symptoms worsen or mobility and washing at home become difficult. Ward care is also a good option when the family members or friends providing home care for a critically ill patient feel exhausted.

A hospice is a nursing home that patients can be referred to by a doctor and the municipality covers costs or that they are admitted to as private patients.

There are four hospices in Finland:

What to expect as death approaches?

Having an incurable illness and being aware that death is approaching inevitably preoccupy a person’s feelings and thoughts. Patients and their loved ones fear what is to come and are distressed by what has already passed.

For patients, being ill means being helpless in dealing with the disease and losing one’s powers to make decisions and ability to act. An incurable illness in itself is a considerable burden, and the ways its symptoms affect your life intensify the suffering.

There are a variety of symptoms associated with advanced illness that can be treated with drugs. For cancer patients the most common symptom is pain. Fortunately are many effective means available for alleviating and subduing pain. Some cancer patients do not suffer from pain at any point in their illness.

Cancer pain

As the disease advances a patient’s thoughts and even their personality may alter significantly.  Changes in metabolism and the damage caused by the cancer can affect how one behaves. It is good to remember, though, that the new changes in behaviour are due to the disease and do not reflect a patient’s true feelings.

For many people, the approach of death is a time of anguish and depression. If a patient’s loved ones manage to handle the situation in a normal way, it will often reduce the patient’s own distress. Patients and their loved ones will be able to receive support from nursing staff, hospital priests and terminal care support staff. It is also possible to relieve psychological symptoms with drugs.

It’s usually not possible to predict the duration of terminal care precisely. Due to advanced therapies a patients’ general condition may remain reasonable for a fairly long time, but may suddenly decline and be quickly followed by death. Death itself is usually a peaceful event involving nothing frightening.

Approaching death

What are the practical arrangements immediately after death?

If the person died at home, you should call the home care nurse on duty. The nurse will come to your home to help with anything necessary and will summon a doctor to proclaim the death. The doctor’s presence is not a matter of urgency, and can even wait until the morning after the death. It is not necessary to call the police or an ambulance. One can request the maintenance man or caretaker to fly the Finnish flag at half-mast. The deceased can be taken away in a hearse immediately after the doctor has visited, but there is no hurry, and she or he can remain at home over night if desired.

With a health centre, hospice or hospital, the patient’s loved ones will be alerted when his or her condition starts to decline. After death the loved ones can remain with the deceased person to say their farewells in peace before he or she is moved.

The doctor in charge writes a burial permit and death certificate. The death certificate is then sent by the home based care nursing staff, health centre, hospital or hospice to the Population Register Centre, from where the information is passed on to most other authorities.

Autopsies are not carried out on patients who have been receiving palliative care, as the cause of death is usually clear. Forensic autopsies should be carried out only in cases involving occupational diseases.

The family and friends of the deceased person can make funeral arrangements themselves or through a funeral home or church.

The website of the Social Insurance Institution contains information for survivors following the death of a close family member.

Sources

Hänninen, Juha (2015) Saattohoito-opas. Helsinki: Etelä-Suomen Syöpäyhdistys.