Caring for someone with a terminal illness

Planning for deterioration and death

Receiving a terminal diagnosis can allow patients and their families to think about how they want to use their time. David (Interview 08) feels the family coped day to day, trying to make the most of his father’s remaining time. Una finds it difficult to plan anything in case her husband is unwell and she has to cancel the arrangements. A few made plans to do things they had always wanted to do. Some organised holidays or visited favourite places. Henry’s partner Jane was determined to be at her eldest son’s wedding.
Many patients want to be cared for at home, which can sometimes mean making adaptations or moving home. Lesley and David had to come to terms with selling their house and moving to something smaller and easier to manage. Anne and Jim moved nearer to their daughter, who could support them. Jane had equipment delivered to support her husband’s care at home. Dick and Di obtained a social services grant to modify their home for wheelchair use. They moved out for three months while the alterations were made. In hindsight Dick thinks the disruption had not been worth it as Di only used it for a short time. Roger (Interview 32) decided against having a lift installed; instead he moved the bedroom downstairs and created a wet room. Savita and her husband built a suite of facilities in preparation for when his condition deteriorated. Depending on the extent of alterations, planning permission may be required.
Patients sometimes talked to their carer about their future wishes. Some involved a health professional in these discussions and some carers talked to a professional on their own, or talked with other family members. Patients may choose to discontinue life prolonging treatments in favour of symptom control. Val knew her husband was struggling with his dialysis, so was not surprised when the doctor suggested stopping it. Heather asked her husband’s GP if unnecessary tablets could be stopped. Dick and Di felt it was important that she could die freely without intrusive medical interventions. Roger (Interview 30)’s wife Teresa told him that she would not want invasive ventilation.

Advance Decision to Refuse Treatment (ADRT)
An Advance Decision allows a person to make a legally binding refusal of medical treatment in advance of a time when they lose the ability to make the decisions for themselves (Mental Capacity Act 2005). It can be used to set out the specific circumstances in which a person would not want a treatment to be given, or when a treatment should be stopped. It can be used to refuse any treatment, including life-sustaining treatment such as resuscitation, breathing machines, antibiotics or feeding tubes. An Advance Decision will only come into effect if a person loses the capacity to make the decisions for themselves. (See Compassion in Dying for more about advance decisions.)

There is no requirement to use a solicitor to make an advance decision. Many solicitors offer this service, although there is likely to be a fee. Advance Decisions do have to contain certain wording to be legally binding and therefore it is best to follow a template form.  Compassion in Dying provides an advance decision form free on their website. (See Living with Dying- Information- Advance Decision section for more details about what is needed to make an advance decision legally binding.)

Another part of what people have referred to loosely in the past as a 'living will' is now called an Advance Statement. Though some people use the term Advance Statement interchangeably with that of Advance Decision they are NOT the same Advanced Decisions are used to refuse specific treatments in the future and are legally binding Advance Statements (see below) are a general statement of what a person wants and what is important to them. It is not legally binding like an Advance Decision but it should be taken into account by health care professionals when deciding what is in a person’s best interests.

Advance Statement (Statement of Wishes) 

An Advance Statement can be a written document (such as a letter making their wishes known), a witnessed oral statement, a signed printed card or a note of a discussion recorded in your medical records. It is a general statement which contains information the person feels is important for others to know. It will help people involved in their care to understand what they want and what is important to them if they cannot speak or make decisions for themselves. It is not legally binding like an Advance Decision, but it should be taken into account by health and care professionals when deciding best interests. 

As Compassion in Dying explains, an Advance Statement can cover any aspect of a person’s future health or social care such as:

•    how you want any religious or spiritual beliefs you hold to be reflected in your care 
•    where you would like to be cared for, for example at home or in a hospital, a nursing home, or a hospice 
•    how you like to do things, for example if you prefer a shower instead of a bath, or like to sleep with the light on 
•    concerns about practical issues, for example who will look after your dog if you become ill (Compassion in Dying 2014)

Advance Statements can also be used to nominate someone who you would like to be consulted at the point at which a decision has to be made But if you wish someone else to make health decisions on your behalf you should appoint a Lasting Power of Attorney for Health and Welfare (see Compassion and Dying’s website for more information on Lasting Power of Attorney).

Advance Care Plans or Preferred Priorities for Care (PPC)

An Advance Care Plan is another optional document for people to use to help think about, talk about and write down their wishes and preferences during the last year or months of their life. It will normally be made in partnership with a person’s health team when they enter the end-of-life phase and not before, unlike Advance Decisions, Advance Statements and Lasting Powers of Attorney. Advance Care Plans are used to record care and treatment wishes and should be attached to medical notes and easily accessible to those involved in a person’s care. It aims to help them and their carers plan their care when they are dying. This means that everyone involved in their care knows how that person wishes to be cared for. The most commonly used type of end-of-life care plan is called the Preferred Priorities for Care (PPC) document. If a person has made an Advance Decision, Advance Statement or Lasting Power of Attorney this should also be noted in their Advance Care Plan. 

Advance Care Plans are not legally binding, however, doctors and people involved in their care will know what is important to them and will try to follow their wishes and the document will be taken into account when deciding what is in their best interests. The kinds of wishes you can set out include:

•    Where you want to receive care
•    Where you want to die
•    Who you want to be with you
•    Values such as religious belief or dietary requirements
A decision not to be resuscitated can be included in a living will. Theadora’s mother always wanted to be resuscitated. She would ‘have had an intervention for two more hours of life’. Georgina feels grateful that her mother’s hospice had a non-resuscitation policy. The ’message in a bottle’ scheme is widely used to record medical information and contact details for vulnerable people who are being cared for at home. A sticker on the front door alerts the emergency services to the bottle which is kept in the fridge. Bottles can be obtained from GP surgeries, pharmacies, council offices and many other places (also see The death itself). Una’s husband and Emma’s mother included their living will in this bottle. Carers may not always agree with the patient’s advance decisions' Susan thought it was wrong that the doctors couldn’t help her mother because she had signed a ‘do not resuscitate’ order.
Although Dick’s wife had a living will it was not needed. Many years ago Anne and Jim made living wills. Jim has refused to have a PEG tube for feeding, which would prolong his life. After seeing a TV program together about assisted dying at the Dignitas clinic in Switzerland, Anne asked him whether he would like to go there; after some thought he decided he wouldn’t want to.
Some people applied for a Lasting Power of Attorney which enables an appointed person to make decisions about the welfare, money or property of another person when they lose the capacity to make decisions themselves. Some people never needed this because their sick friend or relative was able to deal with their affairs right up to their death. The forms can be downloaded from the internet but Roger (Interview 30) wanted to ensure that his wife’s application was authorised by a solicitor because of her speech difficulties. However, it had been difficult at first to find a solicitor who would do it under the legal aid scheme.

Maggie and Donald had organised power of attorney when updating their wills. Savita has power of attorney for her husband and finds it a strain looking after his finances as well as running the house and caring full-time. Lesley and David have not thought about advocacy as they tend to deal with things as they happen.
Several patients decided to make or update their will after learning their diagnosis. Heather and Bill updated their wills free of charge in exchange for a bequest to a charity. Several couples had arranged ‘mirror’ wills leaving everything to the surviving spouse. When Henry’s sick partner made a will Henry decided to revise his own will and they discussed their bequests together. Ruth was able to write a will for her mother on the internet. Tricia is comforted to know that her mother wrote her will when she was well, so it is one less thing to worry about now. Although John (Interview 12)’s son Tim didn’t have many possessions, he wrote a letter detailing a few bequests, but it was mainly a letter of love, which gave John and his family tremendous comfort when they found it after Tim’s death.
Some patients expressed wishes about where they wanted to die (see Thoughts about the place of death’). Many patients also expressed wishes regarding aspects of their funeral. Some planned and pre-paid for their funeral. Others made their funeral wishes known in their will. (For more about funerals see ’Practical things after death).
Some carers said it had been difficult to initiate conversations with their sick friend or relative about their impending death and its implications for the family. Many of those who did discuss it wanted to know how or when the death would happen, and some asked a professional. It is impossible for even experienced health professionals to accurately predict when death will occur (see also The death itself). Some people spoke to us about how they had said goodbye to their dying friend or relative. Jane had told her children to tell their father they loved him; Fiona said goodbye to her mother gradually over time.

Last reviewed September 2014.
Last updated September 2014.


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