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What is Palliative Care?

In this guide, The Live in Care Company takes a closer look at palliative care and discuss what palliative care means, and what end of life care involves.

 

This guide will cover:

What is palliative care?

When does end of life care begin?

Who provides palliative care?

What is the cost of palliative care?

Specialist care and general care

How can we help?

 

Discover more about the types of elderly live-in care at home here.

 

What is palliative care?

 

Palliative care is care, treatment, and support that is provided to someone who has a terminal illness. Terminal illness means an illness that is likely to result in that person dying, such as heart failure, cancer, or dementia, amongst many others. Palliative care can also be provided to those who are frail in their older age and have deteriorating medical conditions. The word palliative means pain relief, so palliative care is focused on easing symptoms and does not just focus on the end of life care.

 

It is important to understand that although there may be no treatment available to stop the progression of the underlying disease, this does not mean that care should be abandoned. Palliative care provides good symptom control, helps with pain relief, and ensures the patient is comfortable. A focus on reducing suffering for not only the patient but also their loved ones is instrumental in the principles for palliative care.

 

Palliative care takes a holistic approach by integrating physical, psychological, and spiritual aspects of the patient into consideration in order to provide optimal care for the person and their support system, rather than just looking at the disease or illness.

 

Palliative care is about providing comfort care and support in whichever way is needed, whether this is to do with pain relief, psychological distress, spiritual questioning, or provision of social support. The main aim of palliative care is to provide comfort and improve quality of life.

 

When does end of life care begin?

Palliative care can be received at any stage in a life-threatening illness. It is not only offered when someone is going to die soon and some people may benefit from palliative care for many years. Sometimes palliative care is offered alongside treatments such as chemotherapy or radiotherapy.

 

However, although palliative care may be provided at all stages during a terminal illness, a crucial aspect of palliative care includes caring for people who are nearing the end of life. This part of palliative care is usually called end of life care. Usually, the end of life pathway is for those people who are considered to be likely to die within the next 12 months, although this is not always possible to predict.

 

End of life care is a tailored approach for every individual since needs will not be the same for all. Providing high-quality care for those in their final days and hours of life is essential in palliative care and is usually initiated when the patient has symptoms that would indicate their life is ending. The end of life care pathway involves 6 stages that help guide healthcare practitioners and carers through the palliative care process whilst also considering the patient’s care plan to ensure that their desires are fulfilled.

 

The 6 stages that constitute the palliative care guidelines include:

 

  1. Discussions that take place as the patient’s end of life approaches
  2. Assessment, care planning, and reviews of the current care being provided. This is continually reviewed as care needs fluctuate.
  3. Coordination of care from a multi-disciplinary team who each bring expertise from different specialties.
  4. Delivery of high-quality services in the appropriate environment, whether that be a care home, hospital, hospice, or at home.
  5. Care in the last days of life may include helping loved ones to process the events around death and to help ensure the patient is in as much comfort as possible. Often spiritual support can be brought in during these times.
  6. Care after death for matters that proceed after the patient has passed away. This can include bereavement support for loved ones.

 

It is important for patients to be involved in decision-making and to have their wishes taken into account. This may not only be around medical decisions but also when thinking about funeral planning, wills and even considering who they want around them during these times. If you have not yet put a power of attorney in place, staff will be able to advise you to do so in case the person approaching the end of their life loses the ability to make decisions for themselves.

 

The key principles of palliative care

 

There are also 5 core principles that those involved in palliative care follow.

 

These are:

  1. To relieve pain and other distressing symptoms associated with the disease or its treatment
  2. To recognize death and dying as a natural process
  3. To neither prevent nor promote death
  4. To inform the person’s care through spiritual and psychological principles
  5. To support the patient so they may continue to live their best life

 

These principles are followed closely in order to provide a “good death” for someone and their loved ones.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Image source

 

This image can help others better understand how end of life care and terminal care are embedded within the wider field of palliative care. End of life care begins when someone is suspected to have weeks or months to live which then transitions to terminal care which is for the last hours of a person’s life. Some things are included in each circle such as psychosocial support, which means support from loved ones, psychologists, and others within the patient’s social system to enhance wellbeing. Psychosocial support is also extended to loves ones in the terminal care phase to ensure that grieving and bereavement are appropriately addressed and managed. Symptom management is also seen in all circles and is provided by a palliative care team to ensure symptoms are not left unattended which may lead to unnecessary pain and suffering.

Who provides palliative care?

Often palliative care can be provided by a multidisciplinary team, where different people from specialist disciplines work together to coordinate the care of the person with the illness. If someone is receiving the care within their home then their GP can help to organise district nurses to visit the home and also arrange for any additional specialist care that may be appropriate.

 

The people involved in the palliative care team often include:

 

The patient: they are considered a member of the team as decisions must be in accordance with their wishes.

 

The patient’s loved ones: they are also considered members since they are involved in helping the patient feel comfortable and cared for. They can be included in helping to formulate a management plan, as they often know the patient well.

 

The core team:

  • Medical doctor(s)
  • Nurses and carers
  • Social Worker
  • Physiotherapist
  • Occupational Therapist
  • Chaplain or Pastoral care worker

 

Others:

  • Clinical Psychologist
  • Pharmacist
  • Music and/or Art Therapist

 

If a hospice is a preferred choice then additional therapies and rehabilitation may be offered.  There are also opportunities to meet other people who are receiving hospice care.

 

What is the cost of palliative care?

 

Palliative care provided by the NHS and 3rd sectors such as the Sue Ryder charity and the Macmillan cancer charity are free of charge. Whether there are any costs associated with palliative care will depend on where you choose to be during end of life and the level of care involved.

 

You can receive end of life care:

 

  • At home
  • In a care home
  • In a hospital
  • In a hospice

 

Usually, an assessment is carried out to deem which is most suitable.

 

End of life care at home

 

You may be able to receive care for free at home if an assessment for NHS continuing healthcare is carried out and you are deemed eligible. Sometimes you might have to pay a bit more than the Government is prepared to fund if you want additional services but usually your needs would have been accurately assessed so this is not necessary. When you start to receive palliative care, a team made up of your GP, community nurses, social care workers and specialists will be the ones visiting you regularly. If you are receiving palliative care at home then your GP will have overall responsibility for your care and for prescription of medication. They can also help arrange you going into hospital or a hospice if needed. If you are keeping your usual home carers on and you normally pay for this care then you will need to continue paying for these carers as before.

 

Click here to read our guide on adapting to palliative care at home.

 

End of life care in a care home

 

If you are already living in a care home then you may already by paying for your care. This will not need to be altered even if you are at the end of life. However, some residential care homes do not have specially trained staff for palliative care. In these cases some people may move to hospital or receive hospice care. This is free of charge and can be delivered in a hospice, at the care home or in your own home.

 

End of life care in hospital

 

If you choose to receive end of life care in a hospital then you will be cared for by the healthcare team on the ward. Palliative care teams in hospitals can also monitor discharge plans and arrange for individuals to be transferred to receive palliative care in hospices, care homes or in their own home, if this is later decided.

 

End of life care in a hospice

 

If you decide to move to a hospice for end of life care then hospices are free of charge for people with terminal and life-limiting conditions. Charities usually cover these costs through fundraising, community events and charity shops. They may also receive some statutory funding.

 

Specialist care and general care

 

In some cases, the level of general care provided may not be adequate to meet the complex needs of the patient. In these cases, a specialist assessment is undertaken which leads to recommendations for care that may be provided in addition to the person’s usual team or it may be carried out by the usual caring team, if they are able to provide these extra needs.

 

The emphasis of specialty care is holistic care for patients and includes providing psychological assistance, spiritual support, advice and help with managing symptom control, as well as assistance with social and financial issues. As with all palliative care, the focus is on quality of life. Some examples of why specialist care might be helpful are complex symptoms, certain family situations and ethical issues regarding treatment.

 

The specialist team should usually have input from Physiotherapists, Occupational Therapists, Social Workers, Psychologists, Spiritual practitioners, Dieticians, Speech and Language Therapists, Pharmacists and Specialists in interventional pain management.

How we can help

At The Live in Care Company, we make the procedure of arranging elderly live-in care hassle-free and straightforward especially when you are seeking help for an elderly relative and you are concerned about palliative care.

 

Our team will be happy to speak to you and will take the time to help you to understand your options fully before matching you with a wonderful live-in carer.

 

You may speak to us by calling 0118 449 2373, filling in an enquiry form on our website, or emailing [email protected].

 

 

 

 

 

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