Identifying people who may be in their last year of life is a crucial first step and must be done before the practicalities of end of life care can be put in place. It is difficult to do but a number of factors can help:
- What the person thinks about their health – often the people suffering the illness notice changes first but may be too frightened to say anything
- Age of person
- The illness the person suffers from
- Other new medical problems e.g. recent heart attack, stroke or new diagnosis of cancer
- Severe infection
- Recent or multiple admissions to hospital
- Weight loss
- Increasing frailty
- Reduced mobility
Very often health care professionals are not surprised when their patients die but it can be difficult to pin point exactly what it is that makes them think that person's death was to be expected. Asking the 'surprise question' can be useful in identifying patients in their last year of life – 'would you be surprised if this patient died in the next 12 months?'.
Why is it important to identify people who may be in their last year of life?
Identifying people who may be in their last year of life provides opportunities for both them and the health care professionals involved in their care:
For dying people
- To talk about their concerns
- To plan for their future care
- To express priorities and preferences for future care including preferred place of death
- To make a will and make provision for any dependent relatives
- To get their financial affairs in order
- To plan their funeral or make their wishes known to their families
- To decide if there are circumstances in which they would not want certain types of treatment (advance decision to refuse treatment)
- To decide if they would not want any attempt to resuscitate them if their heart stopped (cardiac arrest)
- To appoint a lasting power of attorney to make decisions on their behalf if they should lose the capacity to decide for themselves
- To talk to their loved ones before it's too late
- To see friends and relatives before it's too late
- To do something they've always wanted to do before it's too late
- To help make death as good as it could be
- To tell people if they want to donate tissue or organs to help someone else after their death
For health care professionals
- To have sensitive discussions with patients and their families
- To assess patient and carer needs
- To help patients plan for the future
- To provide more support to patients and their families
- To improve co-ordination of care and communication with other service providers
- To enable more people to die in the place of their choice
- To help make death as good as it could be
Not surprisingly talking about all these things is not easy for dying people, their families and the staff looking after them. Not everyone has the skill and confidence to initiate these sensitive discussions. It also takes time to make plans. That's why it's important to start early; not to wait until the last days of life when it is more obvious that a person is dying but too late for them to achieve what they want.
There will always be some people who do not want to talk about or plan their future care. That's absolutely fine. Advance care planning is an entirely voluntary process.
A check list of things to do
- Make a will and ensure someone you trust knows where your important papers are kept
- Make arrangements for the care of dependents
- Plan your pet's future care
- Plan your funeral
- Talk to your family about where you want to die
- Make sure your family know your wishes about tissue and organ donation
Advance Care Planning (ACP)
Advance Care Planning (ACP) is a voluntary process of discussion between you and your care providers (e.g. doctor, district nurse, social worker, specialist nurse) and planning ahead in anticipation of some deterioration in your condition. If you wish, your family and friends may be included.
An ACP discussion might include:
- Your concerns
- your important values or personal goals for care
- your understanding about your illness and prognosis
- your preferences for types of care or treatment that may be beneficial in the future and the availability of these
- Discussions should be documented, regularly reviewed and communicated to key people involved in your care
Preferred Priorities for Care (PPC)
You can record your advance care planning discussions in a Preferred Priorities for Care (PPC) document. You can do this even if you have made a personal portfolio as there may be information in your personal portfolio, e.g. financial details, that you would not necessarily need to share with your doctors and other health and social care professionals involved in your care.
The PPC is for anyone who wishes to plan for their future end of life care It is a recognised end of life care tool used to help people with their advance care planning. It is a simple booklet with spaces for you to fill in with your thoughts and feelings about your illness, what is happening to you, your preferences and priorities for your future care and where you would like to be cared for in the future. You can include any information that is important to you such as where you would prefer to die if possible, who you would like to be consulted about decisions relating to your treatment if you are unable to decide for your self.
The PPC is kept by you but you need to inform the people involved in your care that you have a PPC. It can be helpful to carry your PPC with you when you attend hospital outpatient or GP appointments or if you are admitted to hospital or a hospice.
Make sure that your family and home carers know where your PPC is kept.
Follow the links below for more information and to download a copy:
- Preferred Priorities of Care Information
- Preferred Priorities of Care Document
This kind of advance care plan is an advance statement of wishes and preferences. It is not legally binding but must be taken into consideration if you are unable (lack capacity) to make decisions for yourself.
Do Not Attempt Resuscitation (DNAR)
As your health deteriorates the risk of your heart or breathing suddenly stopping (cardiac or respiratory arrest) increases. If this happens in the presence of health care professionals (doctors, nurses, ambulance crew, paramedics), they will usually attempt to resuscitate you by giving an electric shock to the heart and starting artificial breathing (mouth to mouth or via a tube into the lungs). This is not always successful and is often an undignified way to die. You may choose not to have any attempt at resuscitation if your heart or breathing stops. If this is your choice, you must inform the health care professionals looking after you and they will complete a special form – a DNAR order.
Often the decision not to attempt resuscitation in case of cardiac or respiratory arrest is made by the doctors involved in your care. This decision is made when it is clear that any attempt would be futile and would lead to an undignified death. The decision will be discussed with you or your family if you are too poorly to understand what is happening to you. A DNAR order should not be completed without your knowledge or your family's/next of kin's if you lack capacity and the decision must be reviewed regularly.
Lasting Power of Attorney (LPA)
An LPA is a new statutory form of power of attorney created by the Mental Capacity Act (MCA). Anyone who has the capacity to do so may choose a person (an 'attorney') to take decisions on their behalf if they subsequently lose capacity.
There are 2 types of LPA:
- a personal welfare LPA is for decisions about both health and personal welfare
- a property and affairs LPA is for decisions about financial matters.
Before an LPA can be used it must be in a prescribed form and registered with the Office of the Public Guardian (OPG). Find out more at www.guardianship.gov.uk.
The welfare LPA has the authority to make decisions on behalf of the person appointing the LPA only when that person lacks the capacity to make decisions for him/herself.
The welfare LPA has a duty to act in the best interests of the person who has made the LPA.
If the decision is about life-sustaining treatment, the attorney will only have the authority to make the decision if the LPA specifies this.
Advance Decision (to refuse treatment)
An advance decision is different from an advance statement of wishes and preferences in that it relates to the refusal of specific medical procedures or treatments. Under the terms of the Mental Capacity Act 2005 an advance decision can only be made when you have the mental capacity to make that decision and it comes into force only when you lose capacity and strict formalities have been complied with to make it legally binding.
These formalities are:
- that the decision must specify the treatment or procedure e.g. blood transfusion, assisted ventilation in certain circumstances
- the decision must be in writing, signed and witnessed
- there must be an express statement that the decision stands even if life is at risk