End of life care is just that; the specific care given to people towards the end of their lives and up until their death. It is vital that they get the best support and care so they can be as happy as possible and families can focus on their loved ones.

Looking for the right kind of support and care for a loved one can be incredibly overwhelming, especially towards end of life or after receiving a terminal illness diagnosis. In the words of one of Christies Care’s clients: “thanks to your carers, I could spend good time with my father, rather than being exhausted doing the care.”

This is why Christies Care focuses so much time and effort training its carers to give amazing, person-centred end of life care; to make sure that the end is a good end.

What end of life care involves

End of life care centres on providing care and comfort to improve quality of life by developing a care plan specific to the needs and wishes of the individual needing care, as well as the family. There are 4 primary places end of life care can take place: at home, at the hospital, in a care home, or in a hospice.

At home

Many people prefer to receive end of life care at home, in their familiar surroundings, where they are most comfortable. Receiving end of life care at home is possible. Doctors, community nurses, and specialists have services set up to come to the home when medical treatment is needed and can also provide support and guidance to family and private carers on how best to provide end of life and comfort care.

At the hospital

End of life care can be provided in a hospital where the patient is cared for by their doctor or team of specialists that work there. The patients health and illness is monitored while receiving high quality care and medical treatment. Medical treatment can continue either until their death or until they are ready to be discharged to continue their care elsewhere depending on the patients needs and wishes.

In a care home

Many people choose to live in a care home or nursing home where they can receive end of life care and support as they would have received it in their own home. Trained staff can assist with daily tasks such as preparing meals, dressing and washing.

In a hospice

A hospice is a care facility where specialist palliative care teams, doctors, nurses and social care professionals care for people in the last stages of life. A hospice program, or hospice care, focuses on the holistic health of people at the end of their lives.

If family or carers need a break, people receiving end of life care can continue to receive this support in a hospice facility. This is called respite care. Hospice services vary, and not all hospices offer respite care, but they may offer other hospice care options applicable to the needs of the individual.

Who provides end of life care and support?

End of life care and support is provided by a team of individuals involved in the health and wellbeing of people nearing the final stages of their lives. These individuals include; doctors, nurses, counsellors, social care specialists, caregivers, friends, and family members.

End of life care is often provided by a team of individuals working together from the NHS, community programs, private care organisations, and life care services.

What are the 5 priorities in end of life care?

Recognise

Recognise if someone’s health suddenly deteriorates. This sudden change might be reversible or it may mean they are likely to die soon. A doctor must assess if this change is reversible or not.

If their current change in condition is reversible, it is important to start treatment with the individual’s consent or in line with their wishes. If their change in condition is not reversible and they will likely die within the next few days or hours, this should be clearly and sensitively communicated with them.

Communicate

Communicate clearly and respectfully with someone at end of life as well as others important to them.

Listening to them and their families’ concerns and wishes and responding in a sensitive way is critical to lessening anxiety and providing emotional, psychological, and social care support.

It is important to consider whether the person dying needs additional support in order to understand the information being provided or to make their wishes known. It is equally important to be proactive in initiating communication with those at end of life and family members who may find it difficult to speak about death.

Involve

When making decisions about someone’s health, treatment, and pain management, it is vital to involve them and their loved ones in the process. It is important to respect the level a person wishes to be involved in their own end of life decisions as well as the level they wish their loved ones to be be involved.

In the case where people lack mental capacity to make their own decisions, it is important that the decisions made on their behalf are in their best interest and they are involved as much as possible.

Support

End of life is an emotional and anxious time for all involved. It is important to provide support not only for the person at the end of their life, but for their family as well. Family may also need ongoing support after the death of their loved one. It may be useful to identify additional sources of support such as a chaplain or counsellor.

Plan and Do

Each person is different, as are their needs and wishes. It is important to create an individualised advanced care plan and deliver it with compassion. Included in this care plan is pain relief, symptom control, physical, emotional, spiritual, social, and psychological support.

What matters most in end of life care?

What is most important when planning and providing end of life care, is enabling the person to die in the way that they want, in physical comfort, free of pain, and giving priority to the things that matter most to them in life and after death. Their needs and wishes need to be spoken about and included into their care plan. This care plan needs to be reviewed frequently, and nearer to death, can be reviewed daily or even hourly.

Talking about end of life and planning ahead may be hard, but it is still very important. Mayo clinic and Alzheimer’s Society both suggest speaking to loved ones or clients about end of life, if they have a will or any wishes for a funeral or another memorial service. This will help ease anxiety, and create a better experience at the end of their life.

In the case of people with dementia, it is important to have these conversations as early as possible. For more information on end of life care for people with dementia, you can read their fact sheet as linked at the bottom of this article.

How long does end of life care usually last?

There is no set timeline for end of life care. End of life usually refers to the last year of one’s life but it could be the final months or days when a patient exhibits end of life signs.

What’s the difference between palliative care and end of life care?

There is a common misconception that palliative care is the same as end of life care. While they share similarities in the elements of care delivered, end of life care is a type of palliative care. End of life care will always result in the death of the individual receiving care, while palliative care may progress to end of life care or may be temporary.

Palliative care is specialised care which aims to improve the quality of life for people living with a life-limiting, chronic, or serious illness such as cancer, dementia, stroke, or Parkinson’s disease. Palliative care aims to make them as comfortable as possible, by relieving pain and managing the symptoms of their condition.

Palliative care is a holistic approach to overall health, focusing on physical treatment, mental health, spiritual, emotional, and social support for both patients and family members.

Does palliative care always mean end of life care?

No, not all palliative care will progress to end of life care, as not every life limiting, chronic or serious illness results in death.

Palliative care is often provided alongside curative treatment where patients receive palliative care services for a period of time until they are cured or they have recovered to a point where their symptoms can be managed. Many patients live long and fulfilling lives with ongoing care and treatment from their palliative care team.

Mayo clinic list the following symptoms that may be improved by palliative care and/or palliative medicine:

• Pain.
• Nausea or vomiting.
• Anxiety or nervousness.
• Depression or sadness.
• Constipation.
• Difficulty breathing.
• Loss of appetite.
• Fatigue.
• Trouble sleeping.

Do you have to be terminally ill for palliative care?

No, palliative care does not have any specific outcome attached to it. It can start at any point in the patients illness and last any length of time.

Cancer patients are a good example. Their cancer medical care may involve treatments from a variety of medical professionals including; a team of doctors and nurses as well as a palliative care specialist. Just because someone has cancer does not mean they are dying. Not every cancer diagnosis is terminal. Many people will live with cancer for many years while treating the illness with palliative therapy.

Making the end a good end

With more people needing care in the final stages of life, the importance of end of life and palliative care has never been greater. Our live-in and hourly home care services offer the opportunity to remain in the comfort and familiarity of your home.

We understand what a difference it makes to have the right care plan, the right physical and emotional support for you and your loved ones, and the right carers in place to deliver care with the utmost compassion and respect. At Christies Care, we are a family, from the moment you contact us, you will be treated as one of our own.