How does the resident want their end-of-life care to be?

Those of us who work in healthcare must find natural ways to talk about death. Preparing for a farewell is often important for both the resident and their relatives. Whether employees should call at night, who should be contacted first, and if there are any special wishes are examples of questions that need to be prepared. Many relatives carry grief and need space to mourn.

Residents in the final stages of life have the right, together with relatives and healthcare professionals, to plan for the end – a so-called end-of-life conversation. The formats and times for such conversations often differ between different residences and hospitals. This gives the individual and relatives the opportunity to talk about and plan for care during the last period. Good planning means that the dying person can die in peace with good symptom relief and without unnecessary hospital stays or other misguided medical interventions.

If relatives are not involved in the care, they may not understand that the end of life is approaching. It is then easy for demands for life-prolonging measures to arise that are not beneficial for the elderly. If a dialogue has been held in good time about the fact that difficulties in swallowing are a common symptom in people in the final stages of dementia, it may be possible to avoid inserting a feeding tube to prolong life.

The move-in conversation, together with a contact person, nurse and, if possible, occupational therapist and physiotherapist, is an excellent opportunity to create a good basis for difficult conversations. For the individual and the relative, the move itself can be a dramatic change. The move-in conversation can be a starting point for the dialogue about what is important for the individual and the relative. In order to have difficult conversations, there must be a supportive relationship.

In an elderly home, the doctor often has limited time to get to know all residents. The nurse and other employees therefore have a responsibility here to contribute to a good conversation climate. It is always difficult to predict how long someone has left to live. However, we know that many people when they move in have both large care needs and medical needs. It is therefore of utmost importance to spend time on the first conversation.

During the first conversation, relatives have the opportunity to provide information about habits and needs, things that are valuable for the staff to know in order to provide continued good care and attention. Questions about when and how the relatives want to be contacted, for example at night in case of deterioration, should be addressed.

Many residents have lost their life partner and may have difficulty getting to the cemetery. Some elderly homes have a space where there is room for reflection and grief.
It is possible to find good material to support end-of-life conversations in the palliative register and there are good educational videos online.

Palliative Care
End-of-life care has improved over the years. With the support of the palliative register, we can evaluate the care in the final stages of life and learn to improve from the experience. For employees, it is important to recognize signs of suffering.

In the final stages of life, the approach of care can change. It is more about preventing unnecessary suffering for the individual in terms of physical, psychological, spiritual, social, and existential needs.

When the health condition changes and the assessment is that the individual is approaching the end of life, an end-of-life conversation should be offered with a doctor, nurse, relatives, and the individual, if they can participate. In home care or in a special residence, the end-of-life conversation can be about an agreement not to send the dying person to the hospital in case of deteriorating health, not to start new treatment and to discuss how the individual and relatives want the care to be designed.

Measures to prevent pain and alleviate suffering are arranged together with the resident based on how care needs develop.

In a hospital, this may mean that one switches to symptom relief treatment instead of continuing with chemotherapy treatments, surgery, etc. When it comes to discussions about who should have care in the hospital and to what extent, priorities should always be based on human value, solidarity, and cost-effectiveness, in that order. This means that ethical principles should always guide priorities in care.

Continuous conversations with the elderly and relatives are important even after end-of-life conversations to avoid unnecessary strains and misunderstandings that can occur in end-of-life care and that the dying person is sent to the hospital on incorrect grounds.

There is a dividing line between general and specialized palliative care. General palliative care should be given in all nursing homes, while specialized palliative care includes younger people with other care needs or with severe pain conditions. There should be good support and medical care, around the clock for those cared for at home.

The care should be given in collaboration with the dying person, if possible, and according to the relatives' wishes. In accordance with WHO, the dying person should be given the best possible quality of life at the end of life. In order to enable good care, palliative care should be based on four cornerstones:
• Symptom relief, with both medication and care interventions to alleviate pain, anxiety, nausea, anxiety, depression, and depression.
• Teamwork is collaboration between different professions to establish a health plan.
• Open and constructive communication and dialogue between the sick and dying,
• Continuous information to relatives about health status, symptom relief measures, and care measures. Providing good support to relatives is essential.

Support for relatives can also consist of offering coffee, food, and the ability to sleep over at the residence or with the dying person for those who wish. This means seeing and listening to relatives and getting them to feel security and participation.
At the same time, the contact and relationships between the dying person and the relatives are not always complicated. It is not always obvious for relatives to want to be close at the end of life. People often have a good basis for their decisions and care should not blame anyone.

Everyone who stays with the dying person must show respect and not speak over the head of the person being cared for. The dying person can hear well but may have difficulty communicating, which can create anxiety. Care staff should always speak directly to the resident. Think about the integrity, not to expose but to cover the individual.

It may be good to ask relatives if they want the deceased to have special clothes. Some want to participate and dress the deceased themselves. Many also want to stay and be with the person who has died. It is common for the whole or parts of the immediate family to join. Always ask if there are more people who want to see the deceased and find out if everyone who should receive information has really received information. It happens that relatives cannot agree even in the final stages when someone dies. Offer to contact a priest or someone else who can help and support if needed for conversations.

In our multicultural society, it is also important to follow different cultural traditions. Discuss with the relatives how they want it.

Risk of sores

There are sores that can occur at the end of life and that arise as a result of organ failure and that the circulation in the body becomes worse. These are termed "Kennedy terminal ulcer" after an American nurse who worked for many years with seriously ill and dying residents. These sores arise quickly and often become deep. They can occur at the base of the back, heels, elbows, and buttocks and have a dark red/yellow/black appearance. The patient usually dies within 1 - 14 days. According to an article written by Maria Carlsson, associate professor at Uppsala University, 17% of those who died in healthcare and care homes in 2013 got this type of sore.

Symptom Relief

With today's knowledge about pain relief, unnecessary pain should be avoided. Pain assessment and pain relief are a natural right at the end of life. Other problems that can arise are that the dying person accumulates fluid and becomes short of breath, something that can to some extent be helped with injection drugs.

Swallowing difficulties at the end of life can cause the elderly to swallow wrong and suffer from aspiration pneumonia, which should also be avoided as far as possible. Moistening the mouth with the help of oral care sticks against dry mouth is fully sufficient, the dying person does not experience thirst. A drip only prolongs the process and inhibits the body's own morphine which is otherwise activated during the death process. Care should prevent pressure sores and other complications that can lead to increased suffering. It can be good to have a checklist in the dying person's room where pain, anxiety, contact with a nurse, oral care, turns, and if the resident has urinated are recorded.

In order to avoid unnecessary suffering for the dying person, the turning schedule is usually removed during the last hours, as the turns represent a major strain for the dying person.

In connection with the end-of-life conversation, a care plan is drawn up which should be easily accessible in the documentation system so that employees on call can easily access it and avoid unwanted actions. The medical record then makes a note that the individual should be cared for at home/in the residence until the end of life and that no active resuscitation measures should be taken, if not done at an earlier occasion.

Palliative Register

The palliative register is a register where end-of-life care is evaluated after the person has died. With the death certificate questionnaire, a number of factors are recorded that can contribute to developing care both at the individual unit and nationally. The palliative register is a way to work with quality development and continuous improvements.

The palliative register is a quality register where the responsible nurse registers the care of the dying person in the last period of life. The registration takes place afterwards. About half of all deaths in Sweden are registered in the Palliative Register.

The registration is a learning process both for the person who registers, but if used correctly for the entire operation. The registration provides a retrospective of how well the operation has succeeded with care during the last period of the deceased's life. It gives an insight into where the operation has its strengths and weaknesses when it comes to end-of-life care.

All reporting is done digitally via www.palliativ.se. The register is filled in by the responsible nurse or doctor. Ideally, one should consult the team before the survey is filled in.

The survey asks questions such as
• Did the person receive an end-of-life conversation about the approaching end of life, did the care focus on quality of life and symptom relief and was it documented in the medical journal.
• Did the dying person receive relief from pain and other troublesome symptoms during their last time and were they addressed correctly.
• Were the right prescriptions for as-needed medication.
• Was the care good and adapted to the needs
• Did the dying person die in the desired place
• Did the dying person avoid dying alone
• Did relatives receive the desired support

Reflection - the last time in life
Care staff:
• What do you do to create a good relationship with the relatives?
• Do you feel that you have good knowledge and support to talk about death, breaking conversations, and treatment of relatives' needs and reactions?
• Do you discuss these issues at APT or in the team at any time?
• Is there a readiness for conversation about existential issues?
• Do those who die with you usually have a good last time in life?
• Do you have good teamwork?
• Are relatives taken care of in a good way?

Manager, nurse, occupational therapist, and physiotherapist:
• What do you do to create a good relationship with the relatives?
• Do you have good routines for talking about the last time in life with the resident and their relatives?
• Is there a prepared care plan or can it happen that someone who is dying is sent to emergency care on dubious grounds?
• Do you have trainings for employees about "difficult conversations" and do the staff have access to supervision?
• Do you have information meetings for relatives about, for example, the expected course of dementia disease?
• Do you have a place at the residence that suits for reflection and grief?
• Do you have consensus around end-of-life care?
• Do you usually register in the Palliative Register?
• Do you have good team cooperation when it comes to end-of-life care

Resident and relative:
• Have you been asked what is important to you when life is coming to an end?
• Is there a mourned life partner and a desire to get to the cemetery?
• How do you want your relative's last time to look?
• Do you have any special wishes for the care in connection with death?

Erland Olsson
Specialist nurse
Sofrosyne - Better care every day