End of life care
Below we discuss the care and support you can expect if you may be reaching the end of your life. If you have any questions about any of the topics we cover in this section, you can contact us or you may prefer to discuss them with your care team.
This is a very difficult subject to think about, and it may be that you would prefer not to read about it at this time.
Not everyone with Neuroendocrine Cancer will die from their cancer, but they may die with their cancer. This means death may occur from another cause – such as another health issue, an accident or “natural causes”. But there may come a day when your care team has to tell you that your illness has reached a point where further treatment is unlikely to work.
Hearing this news can be an enormous shock, even if it only confirms what you have been suspecting for some time. There’s no right or wrong way to respond to hearing that you may be reaching the end of your life. You may feel relieved. You may feel a huge sense of disbelief. You may just feel numb.
End of life care
End of life care should help you to live as well as possible, until you die – and that you die with dignity. It should also reflect your wishes, and your care team will discuss these with you and take them into account as you jointly plan your end of life care.
End of life care can include psychological, social and spiritual support for you, your family and your loved ones, as well as physical support (such as pain relief). You may receive end of life care at home, in a care home, in a hospital or in a hospice.
People in lots of different situations can benefit from end of life care – which should begin when you need it and may last a few days, weeks, or several months. Good end of life care is tailored to the person who needs it. You and the people close to you should be at the centre of decisions about your care.
These decisions can be discussed with your healthcare team and recorded in an Advanced Care Plan. Advance Care Plans (ACPs) are normally made together with your healthcare team when you’re nearing the end of life. They are used to record your treatment and care wishes and should be attached to your medical notes so that they are easily accessible to those involved in your care. ACPs are different to making an Advance Decision (Living Will), an Advance Statement or a Lasting Powers of Attorney for Health and Welfare, which can be made at any time. If you’ve made an Advance Decision, Advance Statement or Lasting Power of Attorney, this should be noted in your Advance Care Plan.
Further information about advanced care planning and end of life care is available at www.nhs.uk
Press play to watch Dr Philip Lodge from The Royal Free Hospital and Marie Curie Hospice discuss Neuroendocrine Cancer & Palliative Care.
Press play to watch Nurse Specialist, Nikie Jervis talk to us about Advanced Disease.
Advanced decisions
An Advance Decision allows you to write down any treatments that you don’t want to have in the future, in case you later become unable to make or communicate decisions for yourself. It will only be used if you can’t make or communicate a decision for yourself.
Advance Decisions are legally binding in England and Wales, as long as they meet certain requirements. An Advance Statement allows you to record your wishes, feelings, beliefs and values in case you later become unwell and need care or medical treatment. It provides a space for you to write down anything that’s important to you in relation to your health and wellbeing. It gives those around you, such as your family, carers, and healthcare team, a clear idea of what you want if you can’t communicate this yourself.
A Lasting Power of Attorney (LPA) allows you to give someone you trust the legal power to make decisions on your behalf in case you later become unable to make decisions for yourself. A LPA for Health and Welfare covers decisions about health and personal welfare. This includes decisions about:
Medical treatment
Where you’re cared for
The type of care you receive
Day-to-day things like your diet, how you dress and your daily routine.
Decision Making in Advanced Care.
Dr Mairéad McNamara from The Christie Hospital talks about Advanced Disease within Neuroendocrine Cancer. This video covers topics such as:
- Defining advanced illness
- Why decision making is important
- Considering the frameworks that underpin healthcare professional’s role in decision making
- Exploring the benefits of Advanced Anticipatory Care Planning in advance illness.
Helpful resources
Dr Kathryn Mannix is a world renowned palliative care expert and thinks we need to talk more about death. She was in the hot seat with BBC presenter, Colin Murray, last week on BBC Radio5 Live’s Friday programme on:- What do you want to know about dying and palliative care? Some of the questions posed by our community were included in the discussion:
“How can I prepare my wife for what I know is coming as I want us to do plan together for her future?
“I want to die at home, when is the right time to explain things to my adult children?
“My doctor suggested I need a Health Power of Attorney, what is this please?
“I have no problem discussing my death, but how do I get others around me to do so?
NOTE: This link is only available for 28 days. 09/04/2024
Aura
Aura is the simple online solution to help you & those closest to you manage life & death.
- Connect with family and friends to create your Aura
- Add Important Information
- Prepare your Wishes
- Write your Life Story
- Schedule future Messages.