End of life and palliative care

You have the right to make decisions about your care and medical treatment throughout your life. Deciding right is specifically designed to help you plan ahead and make choices now for a possible situation in the future when you no longer have the ability (or capacity) to make those choices.

If you would like any further information about advanced decision making please visit- http://www.northerncanceralliance.nhs.uk/deciding-right/deciding-right-information-for-patients-and-public/   

How can I make care decisions in advance?

The four main ways of making sure your wishes are considered are:

An advance statement

This is where you write down your wishes and preferences, beliefs and values. You can do this yourself or together with your healthcare team, your carers and/or family.

Advance decision to refuse treatment

This allows you to refuse specific treatments if in the future you lose capacity to communicate them. This can be a simple verbal agreement between you and your health or social care team. However, if you are refusing life prolonging treatment it must be written down.

Lasting Power of Attorney

As well as the options above you can also appoint someone on your behalf to make important decisions for you if you lose capacity. As this is a legal process it is normally done through a solicitor, but you can do it through the Office of the Public Guardian. You need to be aware there is a cost attached to this process. There are two types:

1. Property and affairs: this authorises someone to decide about your money and property if you lose capacity
2. Personal welfare (health and welfare): this authorises someone to decide about health and care decisions if you lose capacity

Emergency healthcare plan

These are relevant if you have a complex medial condition and could experience a health emergency; for example seizures or an asthma attack. This gives direction for carers; for example, who to call, what first aid can be used and more detailed advice for professionals and emergency teams.

End of life care is support for people who are in the last months or years of their life.

End of life care should help you to live as well as possible until you die, and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you.

You have the right to express your wishes about where you would like to receive care and where you want to die. You can receive end of life care at home or in care homes, hospices or hospitals, depending on your needs and preference.

You should be seen by a doctor regularly and if they believe you will die very soon, they must explain this to you and the people close to you. There may be a variety of staff involved in your care such as doctors, nurses and specialist palliative care teams should you require advanced support at any time in relation to pain, symptom control or psychological, social and spiritual care.

• The staff involved in your care should talk sensitively and honestly to you and the people close to you.
• You and the people close to you should be involved in decisions about how you are treated and cared for, if this is what you want.
• The needs of your family and other people close to you should be met as far as possible.
• An individual plan of care should be agreed with you and delivered with compassion.
• This can be a very difficult time for you and your family. It can be very frightening to many people who don't know what to expect.

There are a number of services available to support you throughout this difficult time, such as district nurses, community palliative care nurses and out of hours support.

Age UK and Malnutrition Task Force: Let's talk about death and dying (PDF)

If you have recently experienced a bereavement at South Tyneside or Sunderland healthcare group we offer our sincerest condolences; we would also like to offer any support you may need in this difficult time. You may also be looking for information on behalf of someone else. In either case we hope the links below will prove useful.

Communication between patients, their relatives or carers and hospital staff is vital. If someone you are supporting is approaching the end stages of their life, please speak to ward staff as soon as possible with questions or concerns you may have about their care. Issues and misunderstandings can often be resolved at the time.

Once a death has occurred there can be a tension between the emotional needs of families and practical steps that need to be undertaken such as registering the death and organising the funeral. Finding that balance is never easy but the leaflets below (which can be viewed online, downloaded or paper copies can be requested from any ward) do try to acknowledge this as well which steps to take first.

A guide for parents saying goodbye to your baby (pdf) - 585.10 KB

A guide for relatives when someone dies in hospital (pdf) - 662.81 KB

A guide to dealing with a sudden death in the Emergency Department (pdf) - 646.97 KB

A guide for relatives – When someone is dying

Whether it is for yourself or someone else the hospital’s chaplaincy team are available for support at times of bereavement. You or your relative may have met one of the chaplains, and they are willing to meet and offer pastoral (or spiritual) care any time after a death has occurred.

Visit the chaplaincy page to contact our experienced chaplaincy team.

The Sunderland Macmillan Cancer Patient Support Centre is also based at Sunderland Royal Hospital near the main entrance, and can provide a listening ear, advice and other support to patients with cancer, as well as their friends and relatives.

If you feel that you can’t talk to family or friends, there are multiple online bereavement support groups that you can access:

•           http://www.griefincommon.com/

•           http://www.bereavementuk.co.uk/

•           http://www.riprap.org.uk/support/links/bereavement_support.asp

•           https://www.professionalhelp.org.uk/grief-chat/

•           https://www.cruse.org.uk/

•           https://griefanonymous.com/facebook-groups/

•           https://www.nhs.uk/conditions/stress-anxiety-depression/coping-with-bereavement/

There is also lots of information and advice to support you during this difficult time on our NHS Choices page:

https://www.nhs.uk/conditions/end-of-life-care/

Sunderland Royal Hospital:

Hospital switchboard 0191 5656256

Chaplaincy 0191 5699180

Advice and Complaints Service 0191 569 9855

Patient's Property Office 0191 5699171

Registration Service Sunderland City Council 0191 5205553

Samaritans 08457 909090

Sunderland Counselling Service 0191 5147007

South Tyneside District Hospital:

South Tyneside Hospital Switchboard 0191 404 1000

Chaplaincy  0191 404 1000 (Extension 3244)

Advice and Complaints Service 0191 569 9855

General Office (Patient’s Property) 0191 202 4005

Registrar’s Office (South Tyneside Council) 0191 424 6350

Samaritans Contact Number – 116 123

Lifecycle Primary Care Mental Health Service 0191 283 2937

At Sunderland Royal Hospital we aim to provide the highest standard of care for our patients and those close to them, including the care during the last days or hours of their lives and the support we offer to their relatives and carers.

To make improvements to our services it is necessary to seek the views of family members or carers who were involved in the care during this time. However we know that some people may not feel able to help and if providing information would be too upsetting, please disregard our request. We would understand and fully respect your decision if you feel unable to help.

If you would like to help us evaluate our care please click below to complete our questionnaire. All information we receive will be reported anonymously and will only be used for the purpose of improvement to our patient care.

Care in the last days or hours of life questionnaire (PDF)

Sunderland Royal Hospital:

End of life facilitator: Christine Kelley

Palliative Care Specialist Nurses: Sonia Thompson, Kelly Robinson and Carolyn Willis

Consultant in Palliative Care: Mark Lee and Jonathan Pickard

South Tyneside District Hospital:

End of life facilitators: Priscilla Karumazondo and Joy McDonald 

Clinical Manager: Joanna Saidi

Consultants: Dr Ann Paxton

Matron (Community Services): Kirsy Curran 

Business Manager: Bronia Fleet