Dying is often painful to contemplate, and as a society, we do not discuss death and dying openly. However, the way care professionals approach the process is essential for the individual, family, and carers. People should be supported to ensure they are as comfortable as possible for their remaining time, and plans should be in place to allow them to die with dignity.

‘How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole, and it is a litmus test for health and social care services.’

What is palliative care and end of life care, and what are the differences?

Palliative care is provided to people living with a terminal illness (Such as cancer, dementia, and neurological diseases). It helps you to control the symptoms that you are experiencing, while providing you with the best quality of life. The principle of palliative care is to treat you as a “whole” person, rather than focusing on your symptoms. As a result, it considers psychological, social and spiritual support for you and your family or carers. Palliative care can range from physical therapy to holistic care treatments such as reflexology and aromatherapy and is intended to improve the quality of a patient’s life and their emotional and physical wellbeing.

End of life care is offered to people who are entering the final year of their life. While this is hard to predict, end of life care can be offered to people in the final weeks, or days of their life. End of life care provides support for people whose death is imminent, as well as people who suffer from an advanced incurable illness, such as cancer. This care focuses on making you as comfortable as possible, while assisting you with the preparation of important documents such as wills and funeral plans.

The main difference between palliative care and end of life care is when the care is offered to a you. A person may be in palliative care for 5 years before moving into end-of-life care, whereas another person may move straight into end-of-life care. Palliative care tends to focus on managing symptoms, while running alongside an existing treatment plan. End of life care continues from palliative care, though the care plan may change to fit the needs of the person.

When does care start?

Palliative care:

There is no exact time in which a person should begin palliative care, though, it commonly starts after a person has received a life limiting illness diagnosis. The care will vary depending on the patient’s prognosis. You don’t need to have a terminal diagnosis to receive palliative care. Since palliative care is centred around you receiving the care and treatment, you should choose the care you want to receive.

End of life care:

As with palliative care, there is no exact time in which end of life care should begin. End of life care typically begins in the final months or weeks of a person’s life when their condition advances. Care providers will help to make you as comfortable as possible, while also providing support to your family.

“Although end of life planning is often done as part of formal care planning meetings, informal discussions can sometimes be more productive.” – Beth Britton

Who provides palliative care and end of life care?

Both types of care can be supported by various healthcare professionals, these could include:

  • Doctors.
  • Nurses.
  • GP’s.
  • Hospice staff.
  • Carers.
  • Community nurses.
  • Counsellors.
  • Social workers.
  • Physiotherapists.
  • Occupational therapists.
  • Complementary therapists.

If you are being cared for in your own home or a care home, your GP has overall responsibility for your care. In addition, community nurses will usually visit you if you are being cared for at home.

Creating a care plan with healthcare professionals and your family will help you to make the most out of palliative care.

What are the 5 stages of palliative care?

Palliative care is commonly split into five stages, these are:

  1. Creating a plan

After you have received a terminal diagnosis, your GP can provide you with the details of care providers. Working with the care providers, as well as your family, you will create a care plan that details how you wish to be treated. You may be given a range of treatment options to consider, they will vary based on your condition and symptoms. If necessary, you may be referred to a palliative medicine consultant who will help you to create a specialised medical care plan. During this time, you may wish to select a Lasting Power of Attorney (LPA) and update your will.

  1. Preparing emotionally

Receiving a terminal diagnosis can be an uncertain and emotional time for you and your family. Palliative care teams can provide advice and support for any questions you or your family have. There are also support groups available where you can meet people who have a similar condition to you. Some people may choose to seek spiritual support from their religious leader during this time.

  1. Early-stage care and support

While you have received a life changing diagnosis, your palliative care team will work with you to help you remain independent, while also assisting with symptom management. Their focus is to give you the best quality of life. You may wish to stay at home, and while this is possible, adaptations may have to be made to help you retain your independence. You may be eligible for financial support from your council to make small adaptations to your home. For larger adaptations you can apply for a Disabled Facilities Grant. Foundations, the national body for Home Improvement Agencies, has a useful eligibility self-assessment tool which you can find on their website. Alternatively, you may wish to explore the support you could receive in a care or nursing home. Read more about these here. Anchor link this last to section about standards of care section

  1. End of life care

If your condition becomes advanced, you will need to consider end of life care. It is at this time you will be asked to consider hospice care. This will provide you with constant care, ensuring you are as comfortable as possible. Alternatively, you may wish to stay at home, in which case you may need to consider some form of home care or live-in care. During this time, you may consider talking to your family about your final wishes.

  1. Supporting loved ones

This final stage of palliative care is offering bereavement support to your loved ones. This happens over 12 months. The support given will vary from person to person, as we all grieve in different ways. The support is offered by mental healthcare professionals, usually through the NHS.

Finding end of life and palliative care services

Your GP can provide guidance with palliative care support. While their support is mainly related to medical care, they can refer you to local hospice services as well as liaising with district nurses regarding your care. You may choose to ask a family member if they can provide support with palliative care planning. Local and national charities (such as Marie Curie and Macmillan Cancer Support) can provide various levels of support depending on your condition.

Home Care companies can offer you different levels of home care, such as live-in care and 24-hour care. For this type of care, carers will visit your home to assist you with daily life. They can provide personalised care based on your palliative care plan and condition.

If you are looking for end of life care options, you can use our search for care function to locate care homes and home care providers in your area offering palliative care services. Simply select ‘Palliative Care’ from the ‘Conditions’ drop down, and add your postcode. You can also search hospices here.

Quality standards in end of life care

It is worthwhile asking potential care providers about their approach to end of life care. Many of them may be following national strategies for implementing best practices within their home.

The Department of Health has a strategy for every organisation involved in providing end of life care. Organisations involved in its provision must by law adopt an overall coordination process for this, such as the Gold Standards Framework.

What is the Gold Standards Framework (GSF)?

The Gold Standards Framework (GSF) is a registered charity and has been the UK’s leading training provider for generalist frontline staff in caring for people in the last years of life for over 25 years. GSF is a practical and evidence-based end of life care improvement programme. It works to improve the coordination and communication between different organisations involved in providing end of life care. For instance, between hospitals, primary care and care homes.

What does this mean for the person receiving care?

If your care-provider is GSF trained and accredited , you should receive high quality proactive care, with early recognition of decline, offering advance care planning discussions to clarify your needs and wishes, appropriate referrals as needed and effective coordination of care to ensure these wishes are known and met as far as is possible.



Planning ahead


Why plan ahead


Planning ahead can help you receive the care you want and make things easier for your partner and family when you are nearing the end of life. When planning for the end of life, there are important considerations, and although talking about death may not be easy, it is important so that people have control over the process.


Advance Care Planning


Advance Care Planning happens between you and those who provide care for you. It is designed to help people prepare for the future by allowing them to think about, discuss and write down their preferences and priorities for end of life care. You don’t have to do it, but it can help you and your carers (your family, friends and professionals) to understand what is important to you when planning your care. 


It can involve:


    

  1. Advanced Decision to Refuse Treatment (ADRT): refusing specific treatment.
    2. 

  2. Preferred Priorities for Care (PPC): identifying your wishes and preferences.
    3. 

  3. Lasting Power of Attorney (LPA): appointing someone to make decisions for you.
    4. 



You will need to think about:




    

  •  Making a will
    • 

  •  Planning and sharing funeral wishes
    • 

  •  Preferences for care and support, including preferred places to die
    • 

  •  Creating lasting power of attorney documents to cover financial or healthcare decisions, or both
    • 

  •  Making a decision on organ donation
    • 

  •  Thinking about ‘Digital Legacy’ and access to online accounts
    • 

  •  Sharing wishes with partners and close relatives 







What next?