Time to plan ahead together

Dandelions blowing in the wind in a meadow

Caring to the end

A guide to end of life care and beyond for unpaid carers in Surrey

Time to plan ahead together

Here’s a quick guide for planning end of life care with the person you care for. It explores the importance of taking a planned approach and highlights a number of ways in which, together, you can make an advance plan whilst the person you care for has the mental capacity to make their own decisions:

Why is it the right time to plan ahead together?

When the person you care for has a terminal illness, it can be an especially difficult time for you too.  It will be physically and emotionally demanding with lots of practical things to think about.  You and the person you care for may not feel like planning ahead, but there are a number of reasons why it can help:

  • It can be a good way to start a conversation with the person you care for about what might happen and to make a clear written record of their decisions about their future care and what should happen in their final days.
  • It can make you and the person you care for feel more in control and create a sense of calmness and relief.
  • If you and your wider family are clear about the person’s wishes it can also avoid a lot of anxiety and potential family disagreement later on.

  • It can ensure professional staff supporting the person you care for and their family knows what is important to them, you and wider family in relation to end of life care.
  • The person you care for may assume that if they are unable to make a decision about their own care and treatment because they lack mental capacity, those close to them such as yourself can make decisions on their behalf but that isn’t always the case.  This might be, for example, because the person you care for has dementia and their ability to remember information differs from one day to the next.  The person you care for might also have the capacity to make some decisions but not others. They might have the capacity to decide what they want to wear each day but not be able to make a decision about refusing health treatment.

Mental Capacity

Mental Capacity is the ability to make a decision. A person’s ability to make a decision can be time and decision specific. This means that when trying to establish if a person has mental capacity or not it will depend on when the decision needs to be made and what the decision is, so the person you care for might lack capacity to make a decision on one day but be able to make that same decision another day.

How do I know when the person I care for may lack capacity to make a particular decision?

The person you care for will lack mental capacity to make a particular decision at a particular time if they have an “impairment or disturbance of the mind or brain” for example because they are unconscious, have dementia or a brain injury or a stroke and because of that impairment they are unable to do one of the following:

  • Understand information relating to the decision
  • Retain that information long enough to make the decision
  • Take that information into account when making a decision
  • Communicate the decision in any way

The law says that people must be assumed to have capacity unless we can prove otherwise and we should give the person all the support they need to help them make their own decision.  This will be important, for example, if the person has a sensory impairment, if their first language is not English, or if they have a learning disability and would benefit from information being given in an easy to read format or pictures. We must also avoid assuming that a person who wishes to make what we feel is an unwise decision lacks capacity.  Making an unwise decision is not the same as being ‘unable’ to make that decision.

Can I make health and welfare decisions as their carer?

If the person you care for is assessed by a health or social care professional not to have capacity to make a decision about their health and welfare, a best interest decision will need to be made on their behalf. Although you have the legal right to be consulted on what is in their best interests by the most appropriate health/social care professional responsible for the person’s care, you will NOT automatically be able to make decisions on their behalf. For you to have the legal power to make decisions about a person’s health or care, that person must make you their Attorney for Health and Welfare whilst they still have capacity.  See Lasting Power of Attorney

What does planning ahead involve?

Planning ahead together involves you talking with the person you care for about what they want and don’t want in terms of their future care, final days and after death. Planning ahead involves recording their wishes, so you, the wider family, and health and social care professionals know what to do in the future.  

Questions that you might want to think about with the person you care for include:

  • Where do they want to be looked after in the future?  See choosing where to be cared for.
  • Where would they like to be looked after in their final days?
  • What cultural or spiritual needs would they like to be taken into account eg. religious practices, particular foods to avoid?
  • Is there anything important to their identity eg. preferred name and pronouns, certain preferred clothes?
  • Who do they want to spend time with and doing what in the future?
  • What would be their wishes about their care if they were unable to make their own decisions?
  • Would they like to appoint someone to make decisions for them if they are unable to make them themselves? 
  • Are there any other practical things they need to think about e.g. pet care?
  • Have they thought about what they would like to happen when they die eg. planning their funeral or prepaid funeral plan?  

Compassion in Dying have produced a guide on planning ahead for the LGBT community ‘Your treatment and care: planning ahead for the LGBT community’

Things to think about:

  1. Although it feels hard, have that important conversation about dying and death.
  2. Encourage the person to talk to relevant health and social care professionals and other family members so they know about their wishes too.
  3. Encourage the person you care for to write down their wishes, although they don’t have to. If their wishes are written down it will be much easier for everyone providing care and treatment to understand. There are different forms and templates to help with this.
  4. Whilst the person you care for is still able to make decisions about their own health and welfare, consider with them if they wish to plan ahead in one or more of the following ways:

Advance Statements

  • ​An Advance Statement (sometimes called a ”Statement of Wishes) allows the person you care for to record their wishes, feelings, beliefs, lifestyle choices and values in case they become unwell and need care and treatment. An advance statement can be about anything that is important to them in relation to their future health and wellbeing.  For example an advance statement could contain their preferences for where they wish to receive care (see Choosing where to be cared for), their spiritual or religious needs, or anything which is important to their identity that will inform any choices made by you or by health or social care professionals when they cannot make decisions for themselves.
  • An Advance Statement must be taken into account by anyone making a best interest decision for the person.
  • An Advance Statement is not legally binding; however there has to be a good reason for health and care staff to ignore the person’s wishes.  There could be circumstances where it is not safe to follow an aspect or aspects of the care plan and this should be fully explained to you.

Things to think about

  1. Talk to the person about their wishes. Go to What does planning ahead involve? to help you.
  2. Make sure their wishes are written down. An Advance Statement can be included in an Advance Care Plan. See Advance Statement templates in different languages.

Advance Decision to Refuse Treatment (ADRT)

  • The person you care for is legally entitled to say if there are particular treatments they would not want to have. This is also called an Advance Decision to Refuse Treatment (also referred to as “ADRT” or a “Living Will”). 
  • The person you care for has to have the mental capacity to make their own decision about what treatment they are refusing otherwise it will not be legally valid.
  • The person you care for has to state the specific treatment they do not want and in what circumstances the refusal will apply.
  • If the person you care for chooses not to have a treatment which will keep them alive (known in law as ‘life sustaining treatment’) they have to be very specific about the circumstances, put this in writing, sign it and have it signed by a witness.  An example of this might be the refusal of a mechanical ventilator or a blood transfusion. 
  • The person you care for cannot refuse care to make them comfortable, nor can they request help to bring about the end of their life.
  • It does not cost anything to make an Advance Decision to Refuse Treatment and the person you care for does not need a solicitor to help them make one.
  • A doctor or nurse must follow an Advance Decision to Refuse Treatment as it is legally binding under the Mental Capacity Act 2005.  However, it must be valid.  In other words it must meet all the requirements outlined above AND apply to the person’s situation at that time.

Things to think about

  1. Discuss this option with the person you care for, and also encourage them to talk to a doctor or nurse who knows about their condition, so they can make a fully informed decision and understand what it means if they choose not to have a particular treatment.
  2. You should find out whether the person you care for has previously made a Lasting Power of Attorney (LPA) for Health and Welfare.  Although you can have both an ADRT and LPA , one may override the other in relation to certain decisions.  
  3. Encourage the person you care for to complete a template form to make sure an advance decision is legally compliant.  You and they can then hold a copy and share it with health and social care professionals as well as other family and friends.  In particular, where there is an LPA for Health and Welfare and an ADRT is in place the person should make sure to give the attorney appointed under the LPA a copy of the ADRT.
  4. See how to write an ADRT together with a helpful template.

Lasting Power of Attorney (LPA)

  • A Lasting Power of Attorney (LPA) allows the person you care for to give someone they trust, such as you as their carer, the legal power to make decisions on their behalf if they lack capacity to make those decisions for themselves.  The person making the LPA (the person you care for) is called the ‘donor’ and the person they give the power to is called the ‘attorney’.  The attorney must be 18 years of age or over and the ‘donor’ must have mental capacity to consent to setting up the LPA.
  • There are two different types of LPA: 
  1. An LPA for Property and Financial Affairs gives legal power to the attorney to manage the person’s money and property.  This includes managing bank accounts, selling a property or collecting benefits.  
  2. An  LPA for Health and Welfare gives legal power to the attorney to manage the person’s health and care and includes medical decisions, where healthcare will be provided, as well as decisions relating to day to day care.
  • The donor can have as many attorneys as they want and they can choose how they want those attorneys to act.  For example they might want all attorneys to agree together on every decision made, or they may want them to be able to make decisions separately.
  • The donor can also choose if they want their attorney(s) to be able to make decisions about life-sustaining treatment.
  • As long as the attorney is acting in the best interests of the donor they cannot be overruled by anyone, including healthcare professionals and family members.
  • When the person you care for dies, their attorney(s) must stop any action under the LPA immediately and send the original LPA document and a copy of the donor’s death certificate to the Office of the Public Guardian.

Things to think about

  1. Avoid putting pressure on the person you care for to set up an LPA(s).  They must give informed consent free from pressure for the LPA to be valid.
  2. You should find out whether the person you care for has previously made an Advance Decision to Refuse Treatment (also known as an “ADRT” or ‘living will’). Although you can have both an ADRT and LPA, one may override the other in relation to certain decisions. 
  3. Discuss together what needs to be thought about:
  • Who do they trust to be their attorney or attorneys?
  • Who is best to sign the form to check the person has capacity to set up the LPA? This can either be a professional such as a GP or solicitor or someone who has known them for two years e.g. friend or neighbour?
  • Who can witness the person’s signature and the attorney’s?
  • Who else needs to know about the LPA when registered eg. wider family?
  • What is the best way to obtain the LPA forms and complete them (NB you do not need a solicitor)?  
  • How is the LPA registered (this can take up to 3 months)?
  • To download the forms and guidance to make and register an LPA. Although the forms are fairly straightforward, the person you care for may need some help to understand the terms.  Note the different sections of the form have to be signed in strict sequence and the attorney may need several copies to lodge with banks, pension providers, insurance companies, GPs etc.

Advance Care Plans

  • Advance Care Plans are usually made by someone with their healthcare team when they are approaching end of life, although they can be started at any stage in life.  The plan is used to record the person’s treatment and care wishes and can be reviewed and updated. 
  • If the person you care for has made an Advance Decision to Refuse Treatment, Advance Statement or Lasting Power of Attorney, a note of these must be made in the advance care plan.
  • An Advance Care Plan is not a legally binding document; however there has to be a good reason for health and care staff to ignore the person’s wishes.  There could be circumstances where it is not safe to follow an aspect or aspects of the care plan and this should be fully explained to you. 
  • There are a variety of national and local forms and templates that can be used to record different forms of advance care planning in Surrey. For example:

ReSPECT is a Recommended Summary Plan for Emergency Care and Treatment and is currently being used across much of Surrey.  If the person you care for has not been offered the opportunity to complete this template you can suggest they contact their GP  for more information on ReSPECT. 

Proactive Anticipatory Care Plan (PACe) documentation is a personalised care management plan designed to provide a framework for the person you care for, you and healthcare professionals to work together to plan care. It is being used with patients and families residing in Guildford and Waverley.  If the person you care for has not been offered the opportunity to complete this plan you can suggest they contact their GP to view the PACe form. 

For more general information about advance care planning go to Advance Care Plan website or to the Compassion in Dying website.

Things to think about

  1. Talk with the person you care for about what you are willing and able to provide in relation to providing end of life care so that this is taken into account as part of their Advance Care Plan. 
  2. Discuss sharing of information with the person and professionals.  If the person has mental capacity, have they provided consent (either verbally or in writing) for you to speak to health and social care professionals?
  3. If you have been appointed as the person’s attorney under a Lasting Power of Attorney for Health and Welfare then you should be given all the information you need, including a copy of the Advance Care Plan, to make decisions about the person’s treatment and care.
  4. If you are not the person’s attorney, health professionals have a legal obligation to speak to you as their carer/relative to make decisions about what is in their best interests in relation to their future care. They should listen to your views, although legally they do not have to follow them.
  5. Sometimes you might disagree with the treatment and care decision the health or care professional is making.  In this situation all relevant information should be reviewed with you. If you still can’t agree then you can ask for a second opinion or ask for an advocate.  If this fails then you can make a formal complaint or speak to a solicitor.  Finally you can apply to the Court of Protection to make a decision. There are emergency procedures for this so, if urgent, your case can still be heard.

Do Not Attempt Resuscitate (DNAR) decisions

  • A DNAR decision is a written instruction to medical staff not to attempt to bring a person back to life, in other words using Cardiopulmonary resuscitation (CPR) should their heart stop beating or they stop breathing.  It does not relate to any other form of medical treatment.
  • The decision is usually recorded on a form completed by a doctor.  This makes it easy for health professionals to see it quickly in an emergency.  Here is a link to an example of a DNAR form still being used in Surrey Heath and Farnham. 
  • In the rest of Surrey the ReSPECT form is being widely used to record DNAR decisions. Go to Advance Care Plans.
  • Only a doctor, or a senior nurse with specialist training, can make a DNAR decision or issue a DNAR form, but this will be done in close consultation with the person you care for and yourself. The person you care for cannot make a DNAR decision themselves, but they can ask their doctor or appropriate senior nurse to issue one and they will normally carry out request. If the person you care for wants to ensure refusal of CPR is legally binding then this should be stated in an Advance Decision to Refuse Treatment (ADRT).

Things to think about

  1. Talk to the person you care for about whether they want a DNAR decision to be made. You can use the Resuscitation Council’s website to help them understand what it means to be resuscitated and the complications that can arise. 
  2. If the person you care for cannot make a decision for themselves because they are unconscious or unable to communicate, make sure you talk to their doctor about what you think they would have wanted. Although you cannot decide whether resuscitation should be given (unless you have legal power through a Lasting Power of Attorney), you should be consulted.

Organ Donation

  • Organs can only be donated if the person you care for dies in hospital, usually in intensive care where the blood can be kept circulating. However, tissue (such as bone, skin, heart valves, corneas and many others) can be donated up to 48 hours after a death which does not necessarily occur in a hospital. Up to 50 people can benefit from tissue donated from just one person.
  • From spring 2020 the law around organ donation changed. All adults in England will be considered to have agreed to organ and tissue donation when they die unless they have recorded a decision NOT to donate or are in one of the excluded groups. 
  • If the person you care for does not want to be an organ donor they will need to opt out by registering a ‘refuse to donate’ decision on the NHS Organ Donor Register and by sharing their decision with you. It’s important they tell you what they want, as the family of a potential donor will still be approached to discuss the option of organ and tissue donation. They can also express their wishes by including them in an advance care plan.
  • The new law does not apply to anyone under 18, people who lack mental capacity to understand the new arrangements, those who have lived in England for less than 12 months before their death, or people not living here voluntarily.

Things to think about

  1. Explain the choices open to the person you care for in relation to the new law around organ and tissue donation and ensure they complete the NHS Organ Donor Register in accordance with their wishes.
  2. Ensure you are aware of any particular requests or requirements they may have to help ensure the organ donation goes ahead in line with their faiths and beliefs.

Provide any important information to doctors about the person you care for medical, travel and social history so as to ensure their organs can safely be given to someone else. It is worth checking out the facts before making a decision.

Having a back-up plan

Have you thought about what happens to the person you care for if something happens to you?  As well as planning ahead with them about their health and social care decisions it is important to think ahead about what might happen if you are suddenly unwell, have an accident or have to go into hospital. Action for Carers in Surrey have designed a helpful carer emergency planning form to be used alongside Surrey’s carer emergency card. 

Things to think about

  1. Consider arranging a back-up person to provide care if you cannot. Do you have a family member or friend who would be willing and able to be contacted if you find you are suddenly unable to care? Discuss with them what they would need to do and give them a copy of any emergency plans. 
  2. Consider developing an emergency plan which documents key important information about the care and treatment of the person you care for. Leave in a prominent place in their home so it can be easily seen, or leave a ‘message in the bottle’. You can also give this information to the back-up carer and key professionals involved in the person’s care.
  3. For all you need to consider look at your emergency plan. If you are not able to care and there is no suitable back-up carer, contact your local social care team. They can arrange for a paid care worker to come to the person you care for home or arrange for them to go into a care home, nursing home or hospice. 
  4. Ask for a carer’s assessment. The person you are caring for can also have a social care needs assessment. Both these assessments should include a discussion about what happens in emergencies and what needs to be put in place if you fall ill.
  5. Consider getting a carer’s emergency card. The card is provided free of charge. It includes emergency contact numbers for two friends or neighbours who may be contacted to step in and help and should be carried in your bag or wallet at all times.  Email contactcentre.adults@surreycc.gov.uk for a card/leaflet.

Choosing where to be cared for

  • An important aspect of advance care planning is to explore with the person you care for how and where they wish to be cared for now, in the future and also in their final days. These may be different places including home, residential or nursing home, hospital or hospice. It’s important to bear in mind what is important to one person may not be important to another and the person you care for may also change their mind.   
  • There are a number of important factors that need to be explored when deciding where to be cared for.

   These may include where:

  1. pain and discomfort can be best managed
  2. appropriate specialist care can be provided
  3. the person can be close to the people or pets they most love
  4. the person can be in familiar surroundings with familiar belongings
  5. dignity, privacy and respect can be best provided
  • It may not be possible to provide the care the person you care for needs in the place they would like, for example if a lot of specialist care is needed it might not be possible for them to stay at home.
  • Not only may the person you care for change their mind about where, but you may change your mind about how willing and able you are to care.  If things are going differently to how you expected plans can be changed. This is fine. Making a decision now doesn’t mean it can’t be changed.
  • Talking about how to pay for end of life care is an important consideration when discussing where to be cared for. There are lots of different sources of help with end of life care costs and sometimes it is difficult to work out what you may or may not be entitled to. To help with this go to Funding End of Life Care.

Things to think about

  1. Seek clarity about the type of care the person you care for wants at the end of life that might influence where end of life care is best provided.
  2. Discuss the options of where to die with the person you care for, outlining the pros and cons of each option. If their preference is to receive care at home there is a Which guide to ‘How to get end of life care at home.’
  3. If the person you care for is not sure, talk with other family, their GP, and other health or social care professionals involved in their care. Discuss diagnosis, prognosis and type of care they might need, and which setting might be right for them and for you in your caring role.
  4. Think about what care you and their family are able and willing to provide, not just now but also in the future and in the person’s final days.  Bear in mind the nature and level of support you feel able and willing to provide is likely to alter as the person’s care needs change.    
  5. Consider the nature of your caring role and what you want it to look like towards the end of the person you care for life eg. focus on shared activities, creating memories rather than providing hands on care. If you’re considering sharing your home you need to know what this means to both you and your family
  6. When decisions about where have been made it is important the person you care for and/or you tell other family, friends and health and social care professionals.
  7. Encourage the person you care for to make a record of where they want to be cared for in an advance care plan.

Deputyship Applications

  • The person you care for may have lost their ability to make their own decisions about their health and care and/or they may be unable to manage their property and financial affairs (see Mental Capacity). The person you care for may have already planned for a time when they cannot make their own decisions by putting a Lasting Power of Attorney in place (see Lasting Power of Attorney).  However if they haven’t done this, and you need to make certain decisions on their behalf, you will need to apply to the Court of Protection to become their deputy. This is a way of getting the legal authority necessary to make decisions on their behalf when they no longer have capacity to set up a Lasting Power of Attorney.  
  • There are two different types of deputyship: one for decisions about a person’s property and financial affairs, and one for decisions about their personal welfare. Although a deputy is often a carer, relative or friend, in some circumstances it could be a professional such as a solicitor, accountant or another professional felt to be appropriate by the Court of Protection. To be a deputy you do need to be 18 years or over and agree to be a deputy. It’s also possible for a person to have more than one deputy in which case the Court will tell you how to make decisions if you are not the only one.
  • In order to become a deputy you will need to submit an application to the Court of Protection.  This involves providing the court with detailed information about the person you care for circumstances and finances by completing  a number of different forms. Once the forms are submitted the Court will assess and decide on your suitability to be a deputy based on the information you have provided. The person you care for will be notified as will any significant others in their family.
  • It is possible to make an emergency application where a person’s life expectancy is very short or to execute a will. You can also make such an application if the person you care for needs urgent medical treatment or you want to prevent them from being removed from the place where they live. Phone the court on 0300 456 4600 and ask to speak to an urgent business officer. They will discuss the case with you and make arrangements to receive your application and present it to a judge. There is also a specific emergency applications phone number which is 0207 421 8824 (or 0207 947 6000 out of hours).
  • See deputy responsibilities for further information, how to make an application including the forms that need to be completed, and the fees involved.

Things to think about

  1. Think carefully before making a deputyship application about what is involved and consider getting further advice from a solicitor before going ahead. There are ongoing duties and responsibilities beyond making the application that you will be expected to carry out.
  2. The application process can be long and you should take into account the fact that a decision can take weeks, sometimes several months. If urgent, consider making an emergency application.
  3. You will also need to pay a court fee, although in many cases this will come from the finances of the person you care for but you should check this out with the court. It is possible to get exemptions or reductions depending on the person’s means.


A Will is a legal document which sets out how a person wishes their money, property and possessions (known as their ‘estate’) to be dealt with after their death. Making a Will is important because:

  1. If the person you care for dies without a Will, they are said to have died ‘intestate’. Their estate will be distributed in a fixed order in accordance with a set of rules dictated by law.  This means that the person’s estate may not go to who they intended it to go to.
  2. A Will not only sets out who a person wishes their estate to go to but appoints the individual dealing with the administration of the estate (known as the ‘executor(s)’). When a person dies intestate they will have no control over who acts as executor(s) in their estate and instead the court will appoint someone to deal with the estate known as the ‘administrator(s)’. Go to Dealing with the estate for more information about the role of an executor and administrator.
  3. Without a Will, dividing up the estate can be stressful and time consuming for those having to deal with it. 
  4. Having a Will can give peace of mind to the person you care for and their family in their final days, knowing that their financial affairs have been left in order and that their loved ones are taken care of. 
  5. Making a Will may allow the person you care for to distribute their estate in the most tax efficient way.
  6. If the person has children, a Will can set out who they wish to look after their children upon their death known as a ‘guardian’. 

​​A person ​​making a Will is known as a ‘testator’.  In order to make sure the Will is valid:

  1. The testator ​must be over 18 years old
  2. The testator must have mental capacity to make a Will.  This capacity is a different test to mental capacity under the Mental Capacity Act 2005. See for more information on making a Will and mental capacity. If there is any doubt over the mental capacity of the testator, it is best to obtain legal advice.
  3. The Will must be voluntary and the testator must not have been put under any pressure by another person to make the Will.
  4. A Will must be in writing and be signed by the testator in the presence of two witnesses.  A witness must not be someone (or the spouse of someone) who is going to benefit under the Will. The two witnesses must sign the Will in the presence of the testator after the testator has signed it
  • It is possible for a person to make a Will themselves but this is only advisable where the person anticipates the Will be straightforward. However, using a solicitor is advisable especially where the Will is more complicated. It may be possible to save costs by getting a solicitor to check over the Will which has already been drafted to ensure there are no unintended consequences.  It is important to get a Will right as sorting out any errors or resolving any disputes over the interpretation of the Will could potentially incur significant legal costs after a person’s death.  For more information on when to seek legal advice, what to include in a Will and services which can assist with writing a Will, please visit a local Citizens Advice office
  • If the person you care for cannot afford to use a solicitor, some charities offer free will-writing services in order to encourage charitable donations to be made in wills (although this is not mandatory) so it may be worth considering if they want to make a gift to a particular charity and having a look on that charity’s website.  For further information on different health charities go to the Directory and Further Information.
  • Even if the person already has a Will in place it is important to keep it under regular review, to see if any amendments need to be made, advisably every 5 years or where there is a change of circumstances eg marriage/remarriage/civil partnership; divorce/dissolution/separation; birth/adoption of a child.  In particular, where a person marries, remarries or forms a civil partnership, any existing Will would be cancelled and a new Will should be drawn up.
  • It is important that a person does not make any updates to a Will by amending the original Will itself.  In order to change a Will, a person will either need to make a codicil (this supplements the original Will) or an entirely new Will.  For more information on what is appropriate, see ‘How to change a Will’ section on the Citizen’s Advice website.  
  • Once a Will has been made it is important to store it in a safe place ie. with your solicitor or bank, safely stored at home or with the Probate Registry. Make sure the person you care for informs the executor(s) where their Will is kept as it will be needed when it comes to administering the estate.  Do not to attach anything to the Will eg. by stapling or using paperclips, as this can leave marks on the document and may raise questions about whether a part of the Will is missing.
  • See general information about making a Will 

Things to think about

  1. Help the person you care for to make a list of their assets eg. property, personal possessions, investments etc. together with their value. Establish if there are any liabilities that should be considered. This information will assist the solicitor if the person you care for is obtaining legal advice.  
  2. Talk to the person you care for about how they want to leave their estate. Explain the implications of leaving their estate in a certain way eg. unequal division between children which could cause conflict. There may be a valid reason for them leaving their estate in this way eg. one child has special needs, however encourage them to have a conversation with their loved ones prior to their death or writing a letter with the will setting out their reasons why they have left their estate in this way. This will reduce conflict and potential claims on their estate in future.
  3. Help the person you care for to think about who they want to be their executor(s).  Acting as an executor is a responsibility and can take up time. The person you care for should have a conversation with whoever they wish to act as executor(s) before they are appointed in order to ensure they are willing to take on the responsibility.  
  4. If the person you care for has children, help them to think about who they want to act as a guardian. Being a guardian is an emotional, financial and potentially long term commitment. The person you care for should consider carefully who they would think appropriate to take on this role and should discuss it with the individual(s) concerned before they are appointed.


Trusts are a way of managing assets (for example investments, land and buildings) and there are different types of Trust which are taxed differently.

A Trust can be set up for a number of reasons including:

  1. To control and protect family assets
  2. When someone’s too young to handle their affairs
  3. When someone cannot handle their affairs because they are incapacitated
  4. To pass on assets whilst you are alive
  5. To pass on assets when you die (a ‘Will Trust’) under the rules of inheritance if someone dies without a will
  • The settlor is the person who puts assets into a Trust and decides how it will be used – this will be set out in a document called a ‘Trust Deed’. The settlor will also agree the provisions of the Trust Deed, appoint the trustees and specify the beneficiaries of the Trust.
  • The trustee is the legal owner of the assets held in a Trust and their role is to deal with the assets according to the settlors’ wishes as set out in the ‘Trust Deed’ or their Will. They will also manage the Trust on a day to day basis, decide how to invest or use the Trust’s assets and pay any tax due.
  • The beneficiary is the person who benefits from the Trust. There can be more than one beneficiary, like a whole family or a group of people. They may benefit from the income of the Trust only, or the capital only when reaching a certain age, or both the income and capital of the Trust.

Things to think about

  1. The person you care for may wish to consider setting up a Trust, particularly in situations where they wish to pass on money to a child or young person under the age of 18. A Trust can also be set up for disabled people, including disabled children. In both of these circumstances this is referred to as a ‘Trust for Vulnerable Beneficiaries’ and can get special tax treatment.
  2. There are different types of Trust and each type is taxed differently. Due to the complexity of Trusts it is advisable to contact a solicitor or tax advisor for help. They can advise you whether a Trust is appropriate and, if so, what type of Trust should be used as well as the tax implications.  They can also talk to HM Revenue and Customs (HMRC) on someone’s behalf subject to being given permission
  3. More detailed information about Trusts and sources of support. Help is also available from the Society of Trust and Estate Practitioners.  

Rehoming Pets

  • The person you care for may be very worried about who will look after their pet when they are very ill or after they have died. It may be helpful to them for you to help them plan for their pet’s future either by finding a new home for them or to find some extra help to look after their pet whilst they are very unwell.
  • There may be other family or friends who can help look after a pet or you could pay a local person to help, for example a dog walker. There are also charities and organisations that will help, for example The Cinnamon Trust organises volunteers to help walk dogs and look after pets while someone is in hospital.
  • If looking to rehome a pet, it can help to make a list of things which the person you care for feels is important to their pet and put in priority order eg. amount of inside and outdoor space needed, type of care needed, amount of exercise etc. If you or other family/friends are unable to rehome the pet, there are charities and organisations that will help, for example Blue Cross, Cats Protection, Dogs Trust, and RSPCA.
  • If the person is distressed at planning their pet’s future care, the Blue Cross offers a service to support people who have lost or rehomed a pet.

Things to think about

  1. Talk to the person you care for about different options in relation to more help or rehoming.
  2. Help them to make a list of what type of home their pet might need.
  3. Get help and advice from different local charities and organisations about rehoming.
  4. Gather information about the pet and it’s care needs eg. food, activities, vet records etc, so it is all to hand when needed.
  5. Useful websites include:      

       The Cinnamon Trust        

       Blue Cross      


       Dogs Trust          

       Cats Protection