For those living with a serious illness, palliative care is incredibly important. Understanding what this type of care is used for and what you may encounter during the process can help you to plan ahead for yourself or a loved one. Here, we are exploring palliative care, what it does, the different types available, how to talk about it without fear, how long it could last, and more.
The first thing to understand about palliative care is that while it is often associated with end-of-life care, this is not always the case. The word ‘palliative’ comes from the Latin word “palliare” which means ‘to cloak’, and this word origin implies providing an added layer of protection or comfort when dealing with illness. This is why today it is associated with pain relief.
Palliative care is designed for those living with a serious illness that is causing them significant pain. This type of care focuses on relieving the person of the symptoms, pain and stress of living with such a condition, with the aim of improving their quality of life.
Palliative care is carried out by specialist doctors and nurses who work alongside the person’s family members and carers (if they are receiving care at home) to achieve the common goal of making the person as comfortable as possible.
Anyone of any age could receive palliative care, regardless of whether or not they have a terminal illness. This means that palliative care may be offered alongside other types of care designed to manage or improve the person’s health.
Palliative care has many benefits for seriously ill patients. One 2015 study from the New England Journal of Medicine found that patients with a serious illness who received palliative care ended up living longer than those who did not receive the same care, proving the importance of providing this specific type of care to those who need it.
Yes. In many cases this type of care is used for those with a condition that is likely to lead to their eventual passing, such as cancer or dementia. When this is the case, palliative care is used to make the person as comfortable as possible, relieve any pain, and support them physically and emotionally during the final months, weeks or days of their life.
For those who have a terminal illness, there are usually 5 stages of palliative care:
The difference between palliative care and end-of-life care is an important distinction to make, as many people assume palliative care means imminent death for the person receiving it. This is a common situation, but is not always the case.
To differentiate these two types of care:
Palliative care = This type of care is for those with a serious illness requiring specialist care, such as cancer. Some people with a serious (but non-life threatening) illness may be offered palliative care to help manage their pain relief and ease symptoms.
End-of-life care = This type of care is for those in the final months or weeks of their life, who require specialist care to ensure their pain is managed and they can die with dignity as comfortably as possible.
For pain relief, palliative care is incredibly important, but there are other benefits for those with a serious illness. For example:
There are several different types of palliative care available, and all may be carried out in different locations depending on where the person intends to have their care administered. The first thing to decide is whether your loved one will have palliative care take place in a hospice, hospital, care home/nursing home, or in their own home.
Hospice care is a type of care designed for people who have a terminal illness or whose condition is likely to result in them eventually passing away. Although this type of care is not location-dependent, there are specific hospice centres that are similar to care homes, but designed for this type of care. They are usually well equipped with the staff, professionals and resources required to ensure the person feels pain-free and comfortable as they approach the end of their life.
Hospices are sometimes a preferred choice for people with a terminal illness as they bring benefits such as specially trained staff and medical professionals, additional support for caregivers, and in some cases they could limit unwanted hospitalisations, treatments and procedures.
Palliative care can take place in a hospital, and for patients already receiving care there, it may become necessary that they start to receive palliative care there too. This could be because a patient cannot or does not want to be moved in their current condition due to pain, discomfort or other factors.
While most people prefer to get out of hospital and back to the comfort of their own environment, a hospital setting may be unavoidable for someone with a serious illness requiring palliative care. On the other hand, some people prefer to be in hospital as they feel at ease surrounded by equipment and staff that can help to improve their condition and make them feel safe.
If someone is already receiving care in a care home or nursing home, they may choose to receive palliative care here too in order to minimise disruption to their routine and remain in the same place. Care homes and nursing homes are often staffed with the relevant professionals who can administer this type of care, or an external medical professional may be brought in to help with this.
Often, people with a terminal illness will make the decision to stay at home with the people they love, in the home they know, in order to receive palliative care. Research suggests 71% of people prefer this domiciliary care option over a hospice.
Palliative care at home can be just as effective as receiving the same kind of care elsewhere, and can be beneficial for the person’s mental health. This also allows them to carry on with elements of their own life if they are able, such as seeing family and friends, taking part in hobbies, and having more control over their daily schedule.
As well as the location of palliative care, there are three different types to be aware of. These are; physical care, psychological care, and spiritual care.
When managing the physical side of palliative care, medical professionals will focus on symptom relief, pain relief, and any type of care that can help alleviate the physical stress someone may be experiencing while managing a serious illness.
This might look like managing someone’s nausea, helping with fatigue symptoms, making it easier for someone to swallow food or breathe easily, administering pain relief medication, or offering other options for relieving pain associated with their condition.
The psychological elements of palliative care involve relieving the stress that often comes with a serious illness. By addressing the psychological aspects of a person’s situation, their quality of life can be greatly improved and their family can experience the benefits of this too.
Emotional support is an important part of this type of palliative care, as medical professionals should look to put the person’s mind at ease as much as possible in order to help manage their stress. This could look like providing advice on coping skills, stress management techniques, or if palliative care is required due to a terminal illness, they may require emotional support as they attempt to find a meaning for their experience and come to terms with the end of their life.
Alongside physical and psychological types of palliative care, there is also a spiritual element that must be considered. For those who are approaching the end of their life, spirituality can be an important aspect of care that should not be ignored. People may wish to explore their faith, and caregivers should respect this.
Arranging things like prayer, visits from clergy, meditations, spiritual guidance, or supporting the person’s exploration of religious texts are all part of the support given during palliative care. Whether or not religion is involved, people undergoing palliative care may desire to connect in a spiritual way in order to further understand the reasons for their experience. Whatever the person feels they need should be arranged.
Due to its association with the end of life, it is often difficult to discuss palliative care openly as it can be frightening for those who do not understand it or who associate it with their imminent passing. Whether or not a person is dealing with a terminal illness, it should always be stressed that palliative care does not mean the same thing as end-of-life care.
When discussing palliative care, the person who is to receive this should be made aware that the focus is on helping them feel more comfortable and pain free in order to improve their quality of life, however long this may be.
Here are some tips for communicating with someone who is receiving (or will receive) palliative care:
As mentioned, palliative care is different to end-of-life care, which tends to last for a shorter amount of time depending on the condition the person has. As palliative care is mainly about managing pain, this type of care can last for a long time, either until the person’s pain has improved or until they wish to no longer receive palliative care.
For those receiving palliative care due to a terminal illness, this care could last just a few days or it could last several months or over a year. One 2020 review of studies involving over 11 million patients receiving palliative care during the end-of-life stage found that prior to passing away, the median duration of palliative care was 18.9 days. However, it was acknowledged that the length of palliative care is influenced by the diagnosis, where palliative care is taking place, which country the patient lives in, and other factors.
When someone is living with a serious or life-threatening illness, conversations around palliative care and potentially end-of-life care may become more important, but it can be difficult to understand what each type of care can do.
End-of-life care is the type of care needed when an individual is in the final stages of an incurable illness. Specialist care is required during this time in order to manage pain and keep them as comfortable as possible as they come to the end of their life. This type of care might last several weeks, months or years depending on the condition the person has, any other health conditions they have, and the speed at which their condition progresses.
End-of-life care is an important part of the care process that should be planned ahead of time if the person is likely to pass away from their illness. This is to ensure the individual receiving care has their wishes prioritised, and to make the process easier on family and loved ones.
This type of care often involves difficult physical symptoms and challenging emotions, but the number one aim of end-of-life care is to help people die with dignity and without excessive pain.
End-of-life care may take place in a number of locations, including in a person’s own home. Research suggests that 71% of people prefer to receive end-of-life care at home rather than in a hospice.
Palliative care is a different type of care, and although it can be used as a part of end-of-life care, it can also be relevant for someone living with a serious illness that is causing them significant pain, but will not necessarily lead to their passing.
This type of care aims to alleviate any symptoms, pain and stress the person may be experiencing in an effort to improve their quality of life. Anyone (of any age) may receive palliative care if it is the right fit for them – it is not only offered to people with a terminal illness. Studies have found that patients with a serious illness who were given palliative care lived longer than those who did not receive this type of care.
Palliative care may take place in a hospice, a hospital, a care home or nursing home, or in the person’s own home.
Many people assume palliative care is only for those who are living with a terminal illness, but this is not the case. This type of care is designed for people who have a serious illness that requires specialist care whether they are likely to pass away or not. It can also have benefits for their caregivers.
According to the World Health Organization, most adults who require palliative care have a chronic condition such as:
Other conditions might also require palliative care, such as kidney failure, chronic liver disease, multiple sclerosis (MS), Parkinson’s disease, rheumatoid arthritis, neurological conditions, dementia, and more.
Whether or not the person is likely to pass away from their condition, palliative care may be offered as a way to help manage their pain relief, ease their symptoms, and improve their quality of life.
End-of-life care is designed for people with a serious illness who are in the final months or weeks of their life, and require specialist care to ensure their pain is managed and they can die with dignity and in comfort. According to the NHS, end-of-life care is offered to those with a terminal illness who are expected to pass away within one year.
For clarity, a terminal illness means an illness for which there is no cure, and that will eventually lead to the person passing away. Examples of these types of conditions could be an advanced type of cancer, a dementia condition like Alzheimer’s, motor neurone disease (MND), advanced heart disease, or another condition which is likely to cause eventual death.
Put simply, the aim of palliative care is to relieve a person’s pain and symptoms, while end-of-life care has the same objective, but is designed for those in the final months or weeks of their life. However, there are several other differences that set these two types of care apart:
– What a health and welfare Power of Attorney is
– The benefits of respite care and why you might need it when your loved one requires 24/7 care
– Making an advance statement for care
– How funding works for palliative care
It can be extremely difficult to know how long palliative care lasts, and when is the right time to move from palliative care to end-of-life care. As palliative care is primarily about managing pain, this type of care can last for as long as it takes for the person’s pain to improve or until they no longer wish to receive palliative care. If they are receiving palliative care due to a terminal illness and choose to stop receiving this treatment, end-of-life care will begin.
Studies have found that the length of palliative care is largely dependent on factors such as the type of condition the person has, where their palliative care is taking place, which country the patient lives in, and other factors. The medical professional in charge of your (or your loved one’s) care will need to make a judgement call based on the person’s prognosis, how they are responding to treatment, and what their current health is like.
This is not a decision that is made lightly, and often a team of healthcare professionals will weigh in on the best time to switch from palliative care to end-of-life care. The patient and their family (or whoever the patient would like to be present) will always be involved in the decisions made at this time, and will be given as many options as possible to ensure their health, comfort, pain and dignity are all taken into account, and their wishes prioritised.
Palliative care can be incredibly beneficial for those living with a serious illness, and offering this type of care at the appropriate time is vital to ensure the best outcome. Several studies have found the many benefits of palliative care, including its survival benefit in patients with certain conditions.
The location of palliative care tends to determine the exact team that will deliver it. An individual may receive this type of care within a hospice setting, a hospital, a care home or nursing home, or in their own home, and the team of professionals looking after them will be personalised for their condition and needs.
The palliative care team will work alongside their family members and carers (if they are receiving care at home) to make the person feel as comfortable as possible and address their pain needs. Palliative care may be offered as a physical form of care, a psychological form of care, or even a spiritual form of care, so depending on the specific needs of the patient, different health and social care professionals could be involved.
For example, a person’s palliative or end-of-life care might require hospital doctors, hospice staff, nurses, the person’s own GP, community nurses, counsellors, social care staff, physiotherapists, occupational therapists, complementary therapists, chaplains of all faiths (if relevant), and more. Some other people who may become involved in a person’s palliative care could be support workers, paramedics, pharmacists, and charity volunteers.
A GP will have overall responsibility for care if the person is receiving this at home or in a care home, but community nurses may be more present during this time.
Palliative care may be offered to those with a serious illness, whether or not their condition is terminal. A few of the conditions that commonly receive palliative care include:
Other conditions that may require palliative care include kidney failure, chronic liver disease, chronic obstructive pulmonary disease (COPD), multiple sclerosis (MS), Parkinson’s disease, rheumatoid arthritis, neurological diseases, AIDS, diabetes, congenital anomalies, drug-resistant tuberculosis, and more.
Palliative care has been found to be successful in helping to manage a number of distressing symptoms experienced by people with serious illnesses. Some of the symptoms it can help to manage include:
For many of the aforementioned conditions, pain can be a symptom, and in some cases, this can be all-encompassing and life-altering. More than 30% of patients with cancer are thought to receive inadequate pain relief medication, so whether they experience acute pain, chronic pain, or something else, having this type of discomfort can be extremely difficult while battling a serious illness.
Palliative care can help to manage this with medications such as carefully controlled opioid drugs, steroids, antidepressants, anticonvulsants, local anaesthetics, muscle relaxants and more, depending on the condition being treated.
Difficulty breathing can be a common symptom for people with several conditions, such as advanced cancer, heart failure and more. Studies have found that breathlessness can become increasingly prevalent as a patient’s condition progresses, and this symptom can be extremely worrying and uncomfortable for the person experiencing it, as well as their loved ones and care team.
Managing this symptom can benefit everyone involved in the process and help ease the discomfort of the patient.
Fatigue is commonly experienced in a number of conditions, but it is often found in those facing a serious illness. This could be as a result of the illness itself, or the treatment that is helping to improve the patient’s health. It can be caused by things like pain, eating issues, anaemia, and more. In any case, managing symptoms of fatigue can help to improve the person’s quality of life and give them the physical and mental energy to continue treatments.
In some cases fatigue can be severe, and can therefore negatively impact the patient and their loved ones. It is thought to affect around 75% of patients with advanced cancer, so managing fatigue symptoms can vastly improve their quality of life.
Nausea and vomiting are prevalent in patients living with a serious or terminal illness. This symptom is thought to be experienced by as many as 68% of patients with cancer, and in terminal patients in the last 6 weeks of life, nausea and vomiting is thought to affect more than 40% of patients.
Feeling the constant need to vomit can be very upsetting and distracting, but palliative care can help find ways to manage this symptom, and as a result, greatly improve the person’s quality of life.
For those tackling a serious condition or who have been diagnosed with a terminal illness, depression can be a common and understandable symptom as they come to terms with the reality of their situation, and continue to experience frustrating symptoms on a daily basis.
Palliative care can help to manage the symptoms of depression, and studies have found early palliative care for those diagnosed with advanced cancer led to a lower risk of depression.
Palliative care will often be recommended by the GP in charge of the person’s care, or the doctor in charge if they are in hospital. This type of care can be useful at any point in an illness, but it has been found to be most beneficial when implemented as early as possible, for example, immediately after a person has been diagnosed.
If you have been diagnosed with a terminal illness, palliative care will often be made available to you as soon as you receive a diagnosis so you can make the most of this type of care. However, it is important to remember that it can be offered alongside other therapies and types of treatment, so being offered palliative care does not mean all treatment options have been exhausted, and does not mean that end-of-life care has begun.
The palliative care team managing your care should discuss what this all means before you begin, and speak with you about things like:
Together, you and the palliative care team will build a plan that works for everyone, with the main goal of preventing your symptoms, easing any pain you are experiencing, and improving your day-to-day quality of life. This palliative care plan can be designed to work around any other treatments you are receiving.
As well as your physical symptoms, your palliative care team will usually take the time to address any other concerns you have, answer your questions, and provide both practical and emotional support if needed. This period of time can bring with it some difficult decisions and frustrating emotions, so palliative care is designed to be a more holistic approach to treatment that encompasses a lot of the emotional or spiritual questions, financial concerns, and practical elements that are typically left out of other types of medical treatment.
In most cases, the earlier you can begin palliative care, the better. This is because many studies have discovered the benefits of implementing palliative care early in order to complement other treatments, and improve quality of life. For example:
Ultimately, it is important to put aside any misconceptions about palliative care and its connotations with end-of-life in order to implement this type of care early and experience the many benefits.
There are several places someone can receive palliative care for a serious illness, however one of the most popular places to receive this type of care is at home.
There are several options for where palliative care may be carried out, including a hospice, a hospital, a care home or nursing home, or in a person’s own home. There are several benefits to each of these options. For example, a person who is already receiving care in a nursing home may be more comfortable starting palliative care in the same location rather than moving to a family member’s home.
Many people receiving palliative care – including those with a terminal illness – make the decision to remain in the comfort of their own home surrounded by the people they love, their own belongings, and in the environment where they feel most comfortable. In fact, research suggests around 71% of people with a terminal diagnosis prefer to receive care at home rather than in a hospice.
Palliative care at home can be equally as effective as the care a person might receive in another location, and may come with additional benefits such as:
Receiving palliative care at home may not be possible for everyone. For example, not every symptom will be easily managed outside of a hospital environment, and unique equipment or resources may be required to ensure pain remains limited. If you have questions about whether or not your specific condition (or that of a loved one) can be managed effectively at home, you can discuss this with the GP to ensure you are prepared for the reality of receiving care in this location.
As well as pain and symptom management from the doctor or nurse in charge of care, those receiving palliative care at home can also have their additional care needs met by a home care worker. These needs may include things like:
… and more. If you are considering enlisting the help of a home care agency, feel free to reach out to our friendly team to find out how we can support you during this time.
Palliative care at home will be carried out by a team of specialist doctors and nurses who will work alongside the person’s family members and caregivers. The goal of everyone involved will be to ensure they remain as comfortable as possible by managing their pain and making sure they have everything they need. There may also be visits from counsellors, social care staff, physiotherapists, occupational therapists, complementary therapists, and anyone else that could provide additional support.
Overall, the person’s GP will oversee all care being administered at home, however typically community nurses will be more present during this time.
Palliative care will start when the GP in charge of care feels the time is right. Remember, this type of care may be useful at any point during someone’s illness, and is not necessarily used only for those with a terminal condition. In any case, palliative care has been found most effective and beneficial when it is started as early as possible. For this reason, it may begin straight after a diagnosis has been made, particularly if that diagnosis suggests limited time.
Multiple studies have explored the benefits of early implementation of palliative care, and have found a positive correlation. For example, one 2015 study found patients with serious illnesses who were given palliative care ended up living longer than those with similar conditions who were not. Also, a 2023 study supported the idea that starting palliative care early was effective in improving quality of life in patients with cancer, especially for those with advanced cancer.
The palliative care team in charge of care will work with the patient, their loved ones and their carers to build and implement a Care Plan that suits everyone involved in the process. The main aims of a Care Plan will be to manage symptoms, ease any pain, and improve quality of life, and this plan can begin as soon as the person’s GP believes it is necessary.
The day-to-day realities of receiving palliative care at home depend on the specific condition a person is managing. Palliative care can be relevant for a number of serious illnesses, including cancer, heart disease, chronic respiratory diseases, dementia, and many more. The symptoms associated with each condition and the rate at which they progress means palliative care is never a one-size-fits-all model. Bespoke, person-centred care is crucial during this time, as symptoms and pain must be managed as they progress.
Similarly, the type of home care a person receives during palliative care must be personalised to their own situation. For example, if a person has a lot of family members around, they may only require assistance with personal care tasks. Or, if loved ones are rotating their time to help, home care workers may be able to provide companionship during gaps in care, or could offer respite care to give family members a break to recharge.
Palliative care can be a difficult and emotional time for people going through it and for their families, so we always aim to be as flexible and understanding as possible while working seamlessly with the medical team in charge of care.
No matter the health condition or the outlook, we provide a tailored care experience that puts the person’s needs first and foremost. This might include things like:
The length of time a person will receive palliative care depends on the condition they have, how it progresses, and whether or not this eventually becomes end-of-life care. It will typically last until the person’s pain and health has improved, or until they choose to no longer receive palliative care. In cases where people are receiving palliative care for a terminal illness, this has been known to last anywhere from a few days to a few months or over a year.
When this type of care progresses to become end-of-life care, studies have suggested this could be shorter. A 2020 review of studies involving more than 11 million patients who were receiving palliative care in the end-of-life phase found that before passing away, the median duration of palliative care was 18.9 days. As is acknowledged in the study, it is important to remember the length of palliative care is greatly influenced by the person’s diagnosis, where their palliative care takes place, and other factors.
There is no obvious answer to the question of when palliative care should begin and end, as medical professionals must use their knowledge and years of experience to determine when this type of care should be utilised.
When someone has a serious illness and is undergoing palliative care, there are several practical steps often needed to ensure everything is in place in case their condition worsens and they eventually lose the ability to communicate their wishes and care preferences. An Advance Statement for Care can help with this, as it is a tangible document that can summarise a person’s preferences, beliefs and values regarding their future care.
An Advance Statement for Care is very similar to an End of Life Care Plan, which can be drafted and updated as a person’s condition progresses.
The Advance Statement for Care essentially tells the reader what you would like to happen if a time comes when you can no longer make decisions for yourself, and it can cover any aspect of your future health or social care. This could include:
This document itself can be as short or as long as you like, and should encompass your personal wishes, values, likes, dislikes and much more. By doing this, you can provide a comprehensive ‘handbook’ that gives medical professionals, carers and others more insight into what your wishes are likely to be in a certain situation.
It is recommended an Advance Statement for Care is drafted for someone who has a terminal diagnosis, or if they have a condition that is likely to lead to their eventual passing, such as dementia. However, if someone does not expect to die – but this is a possibility due to having a serious condition like cancer – making an Advance Statement for Care can be useful in case they ever do lose the ability to share their wishes with the people around them.
An Advance Statement for Care is important because it protects your wishes and personal preferences when you cannot. If anyone involved in your care wants to make decisions that will go against what you have stated in your Advance Statement for Care, they will be required to justify this and record their reasons for doing so. This means in most cases, your wishes will be properly respected.
There are a number of health conditions that could lead to someone losing their ability to share their wishes and care preferences, so the Mental Capacity Act 2005 was put in place to ensure that – if someone lacks the mental capacity to make a decision – someone trustworthy can be put in place to do this on their loved one’s behalf.
Although some people choose not to make an Advance Statement for Care and leave decision making up to the medical professionals involved in their treatment, it is usually a good idea to have this in place for clarity as to what your wishes are.
This will avoid any difficult discussion between your loved ones, especially if there is a disagreement about what care you require.
There are several documents needed (and recommended) to be put in place if a person is dealing with a serious illness, so it may be unclear to some people which ones they require, and how they differ. For ease, here is a brief summary of each:
No, an Advance Statement for Care is not legally binding, but anyone who’s making a decision about your care must take it into account.
A number of things can be included in an Advance Statement for Care, such as:
An Advance Statement for Care can be a scary document to make, as it can sometimes feel akin to writing a will. However, having this in place is not always connected to end-of-life care, and is actually a positive thing for your health and care as it ensures you receive the exact type of care you need and want, along with your other more personal desires.
If you would like to discuss creating an Advance Statement for Care with a loved one, remember it is always helpful to put this document in place as soon as possible in case your condition progresses quickly. You can take your time to think about what you would like to include, and chat about it with your loved ones so they can suggest what they think you should include but ultimately, the document is a reflection of your wishes.
Anyone mentioned in your Advance Statement for Care should know about their involvement, for example, if they have been appointed the person in charge of making decisions for you if you become unable to do so. Provided you are still mentally capable of making decisions, remember that anything you write on your Advance Statement for Care can be changed or updated as long as the relevant people know you have done this.
If you have decided to create an Advance Statement for Care, you will be pleased to know that this is relatively simple to do, and you do not require a solicitor to do this for you – you can write it out in your own words if you are able. Or, you can have a trusted family member or a medical professional help you to do this.
It may also be helpful to know that, if you would rather, you can convey your wishes verbally instead of writing them down. Do keep in mind that this only applies to the Advance Statement for Care and not the Advance Decision To Refuse Treatment, and most medical professionals would recommend writing your Advance Statement for Care down if possible so it is clear to all involved.
When creating an Advance Statement for Care, it can be beneficial to include:
You do not have to sign an advance statement, but your signature makes it clear that it is your wishes that have been written down.
Remember, sharing your Advance Statement for Care with others is crucial, as without doing so, medical professionals and other people involved in your care may not know of its existence, and could miss opportunities to respect the wishes in your document.
When you create your statement, remember to share this with anyone mentioned in your statement, other family members (so they can understand your choices and not feel any confusion down the line), and your GP, hospital doctor or any other healthcare professionals involved in your care (so they can contribute information on how your condition is likely to progress, the recommended treatments, and more). You could also update your NHS records, wear a health alert bracelet, carry a crisis card or update any health apps you have on your phone.
You may find it useful to download a free Advance Decision template form on the Alzheimers.org website to use as a starting point for creating your own document. Or, if you have any more questions about creating this, your GP can usually help to point you in the right direction to ensure you have a document that can be considered legally binding, and that encompasses everything you need to respect your care wishes.
When someone has a serious illness or a terminal diagnosis, there are a number of important decisions to be made, and documents usually need to be drawn up to reflect these decisions. One important document that should be considered in these cases is an Advance Decision to Refuse Treatment (‘ADRT’), more commonly known as a Living Will.
An ADRT is sometimes referred to as a Living Will, and this is a document a person can create to make clear which medical treatments they do not want to receive in the future. This means that while a person has the mental capacity to make decisions about their care, they can clearly state in a legal document that, if in future they become unable to make their own health decisions and their life is at risk, they would prefer to opt out of certain medical treatments and procedures.
In a similar way that an Advance Statement for Care allows someone to make advanced decisions about the care they wish to receive, an ADRT allows them to make an advanced decision on whether or not they will receive certain medical treatments that could prolong their life, for example they might express they do not wish to be put on a ventilator, if they are not able to breathe without help.
This type of document is often put in place for someone who has been diagnosed with a serious or terminal illness, but there are a number of reasons a person might choose to create this, such as:
As long as it is created in the correct way, complies with the Mental Capacity Act and witnessed (see below), then an ADRT is legally binding in England, Wales and Northern Ireland.
In Scotland, the legal status of this document can differ, so if you live in Scotland check with your GP what you need to do – in some cases the document may be given to medical professionals as guidance of your wishes, but they may not be legally bound by this.
In the rest of the UK, by creating this document you are letting medical professionals and others know that you do not want certain measures to be taken to improve your health or save your life, which is a statement of acknowledgement that you may pass away as a result of these actions not being taken. When this statement is in place, medical professionals (who know about the document) must take your wishes into account when administering any medical treatments.
It can be difficult to know when the best time is to create one of these documents, but there are a few circumstances in which this becomes more important, such as if someone has been diagnosed with a terminal illness, or has a serious medical condition that has left them in extremely poor health, and they do not want to prolong their life artificially.
Also, if someone is getting older and does not want to prolong their life artificially if they end up in hospital or another treatment centre. You might perhaps be in palliative care but not end of life yet, and want to ensure your life is not prolonged artificially when that stage is reached.
An Advance Decision to Refuse Treatment is not a document to be taken lightly, but for some older people or those with life-limiting conditions, they may decide that if a time comes when they require extensive treatments to stay alive (but risk having an altered quality of life as a result) they would prefer to refuse such treatments.
It is important to remember you can only draft an ADRT if you have the capacity to make a decision yourself.
You do not have to tell your loved ones about your Advance Decision to Refuse Treatment, but it is highly recommended so they are not surprised by this decision if it comes up later. It is always best to let loved ones know about this, and explain why you have chosen to do this.
An Advance Decision to Refuse Treatment is a serious document, so it makes clear that this should onlybe used in the event that you lose the ability to make your own decisions about the treatment you receive. Even if your communication is affected, if you still have the mental capacity to make your own decisions, these will be respected.
The Advance Decision to Refuse Treatment takes priority over any decisions made about your care by your loved ones, so if you also have a Power of Attorney in place for health decisions, your PoA cannot overrule your Advance Decision to Refuse Treatment if they want you to undergo any treatments you have expressly refused to receive.
If you have multiple important documents in place (such as an Advance Decision To Refuse Treatment, a Power of Attorney, and an Advance Statement for Care) with different requests in each, it may be best to involve a solicitor to make sure the appropriate wishes will be taken into account, as it may depend on which order these were created in.
An ADRT can cover a lot of different treatments and procedures, and it is important to be extensive, detailed and clear about the treatments you do not want. Every treatment you do not want must be named, and if a treatment is not mentioned in your ADRT, you may still be given this if medical professionals feel you need it. If you want to refuse a certain treatment in some circumstances but not others, you need to make this very clear.
Keep in mind that this document cannot be used to request any particular treatments – this will be up to the medical professionals in charge of your care – but you can choose to refuse others. It is also important to acknowledge this document cannot be used as a request for your life to be ended. Assisted dying is not currently legal in the UK, and the ADRT can only be used to say what measures you do not want taken to prolong your life if you fall ill or have an accident.
Some examples of the type of treatments you may wish to refuse are:
Important: An ADRT is not the same as a DNR (do not resuscitate), which is a form completed by a doctor to state that someone has requested not to be given CPR (cardiopulmonary resuscitation) to prolong their life.
You can include this in your ADRT, but you should also speak to your doctor about this.
Like the Advance Statement for Care, an ADRT can be created by the individual themselves, or a trusted loved one if they need help doing so, and witnessed by a separate individual.
You should put your statements in writing and ensure the appropriate people have a copy, such as loved ones, your GP, and anyone else you believe may be involved in this type of care. It is a good idea to have your ADRT in a place where paramedics may find it if you end up in an emergency situation, such as in your handbag.
When creating an ADRT, it can be beneficial to include:
You can write out your ADRT in whatever way you would like, but there are templates available online to help you do this, such as this template living will form from Compassion In Dying
If you would like further advice on creating your ADRT, you can seek help from Compassion In Dying by calling 0800 999 2434 or emailing [email protected].
There is also a wealth of information on the NHS website about the ADRT, as well as at Alzheimers.org.uk, and Macmillan.org.uk.
A Lasting Power of Attorney (LPA) is considered an essential document for someone who is unable to make decisions about their own affairs and their care, but it must be created while they can still make these decisions. For example, a person with dementia or Alzheimer’s who is likely to experience cognitive decline and eventually be unable to make the best choices for themselves, or just someone in palliative care and nearing end of life, may appoint their adult child or someone else that they trust to be their Lasting Power of Attorney. This means when the time comes, their loved one is legally allowed to make important decisions on their behalf, with their best interests in mind. There are several types of Power of Attorney depending on a person’s needs, but here, we are demystifying the Lasting Power of Attorney used for health and care decisions.
A Health and Welfare Lasting Power of Attorney (LPA) is a legal document created to give someone the authority to make decisions on behalf of another person, usually an older loved one. This is only used if they no longer have the mental capacity to make important decisions for themselves.
For clarity, there are 3 different types of Power of Attorney documents – Lasting Power of Attorney (LPA), Enduring Power of Attorney (EPA), and Ordinary Power of Attorney (OPA) – which all have different specifications for when they can be used. When we talk about a Health and Welfare Power of Attorney, this refers to the Lasting Power of Attorney, which grants the ability to make decisions for a person due to a health condition, such as an illness or in the event of an accident. Decisions like where they get treatment, what type of medical care they will receive, and what their daily routine should look like are all the responsibility of a Lasting Power of Attorney in the event that a person cannot make these decisions themselves.
Without a document like this, any health decisions would be made by social workers instead, even if the person has children or a spouse – remember, without a Lasting Power of Attorney document, your spouse does not automatically have the right to make decisions like this for you.
There are a number of reasons it is beneficial to obtain a Health and Welfare Lasting Power of Attorney, such as:
A Health and Welfare Lasting Power of Attorney can be incredibly helpful for family members when a person is in the late stages of a health condition, and cannot decide the specifics of their own care. Ideally, you should arrange a Lasting Power of Attorney while you are still in good health and can make decisions for yourself. It may not come in handy for a long time, but having it organised in advance means less stress down the line for your loved ones.
If you are caring for someone with a terminal illness, it is also important to organise an End-of-Life Care Plan to ensure their wishes are documented for this difficult eventuality.
In the case of dementia, cognitive decline is a major issue that can often make it impossible for a person to make realistic decisions about what they need, when they need it and what is best for them in the long run. When this time comes, it may already be too late to obtain a Lasting Power of Attorney due to the Mental Capacity Act.
This legislation assumes every adult has the capacity to make decisions themselves unless it is proven otherwise, so depending on how advanced a person’s dementia is, they may no longer be allowed to appoint their chosen Health and Welfare Lasting Power of Attorney. This is why it is so important to organise this early – bear in mind some types of dementia progress rapidly, so it is vital to put this in place as soon as possible.
If you cannot get a Health and Welfare Lasting Power of Attorney early enough and a loved one’s cognitive abilities have become so limited that they cannot effectively decide things for themselves, the family will need to make a court appeal to determine whether or not they can still be appointed as a Lasting Power of Attorney, or if a deputyship may need to be put in place. This can be costly and time-consuming, so if possible, arrange to put a Lasting Power of Attorney in place early.
Anyone can be chosen as a Lasting Power of Attorney, provided they are over 18 years old, and capable of rational decision-making themselves.
More than one person can be chosen as a Lasting Power of Attorney, and this can be helpful in situations where one Power of Attorney will not always be available to make decisions due to their career, their own family, or their location. If there are multiple children in a family, parents may choose to make all of their children joint PoAs. Jointly appointed Lasting Power of Attorneys must agree on all decisions. However, they can either act:
According to Citizen’s Advice, depending on the type of Power of Attorney in place, a person may be responsible for managing a loved one’s health and welfare-related affairs. For example:
On the other hand, there are some things the Health and Welfare Lasting Power of Attorney cannot get involved in. For example:
If you are looking to appoint a Lasting Power of Attorney document for yourself or on behalf of a relative, you can do this in the UK using the following steps:
If you would like to contact the Office of the Public Guardian to request an application pack by post, you can write to them at:
Office of the Public Guardian
PO Box 16185
Birmingham
B2 2WH
Phone: 0300 456 0300
Textphone: 0115 934 2778
Email: [email protected]
If you would feel more comfortable with their legal advice, you can use a solicitor to create a Lasting Power of Attorney, but you do not need to use one. Many people create this on their own using the steps mentioned above. Keep in mind solicitor fees could be around £500, so always check the cost at the initial consultation and decide if this is the best option for you.
As a reminder, in the UK there are three main types of Power of Attorney to know about, and you should make sure you choose the appropriate one for your circumstances:
If you believe you need to arrange a PoA for health and welfare decisions, you will typically need a Lasting Power of Attorney (LPA), but you can arrange a separate Enduring Power of Attorney (EPA) too if you wish for a loved one to manage your financial affairs. If you are unsure who to appoint or which type of PoA you need, you may wish to seek legal advice.
There are some questions to consider when choosing who your Health and Welfare Lasting Power of Attorney should be, such as:
Although creating a Lasting Power of Attorney document on the government website is a relatively simple process, it can seem overwhelming when you are unsure of how this works and whether or not you are doing things correctly. We hope this guide offers more insight into the process, but if you think you need further assistance you can speak to the Office of the Public Guardian to ask for help, or speak to a solicitor if you would feel more comfortable doing so. You can look for a qualified solicitor using the Law Society online directory.
Remember, if you are helping an older loved one go through the process of creating a Lasting Power of Attorney, always involve them as much as possible so they feel in control of their future and that their health decisions are always going to be in good hands.
Palliative care may seem frightening to those who have not encountered it before, and as everyone’s condition is different and requires bespoke care, no two experiences of palliative care will be the same. There is, however, a general framework for palliative care that many professionals use to determine the different stages a person and their loved ones may expect to go through.
As an overview, there are 5 stages of palliative care that a person may transition through, and these are often recognised by medical professionals and care teams. They include:
Each stage of palliative care is designed to provide the ideal support for the person’s current health situation, so there is no set plan for when each stage moves onto the next. Every person’s diagnosis, symptoms and wishes are entirely different, so a bespoke, person-centred approach to palliative care is important.
Apersonalised Care Plan is the first step in the palliative care process to ensure that medical professionals, caregivers, loved ones, and of course the patient themselves are all on the same page when it comes to what care should be given. The plan should always be tailored to the person’s health needs, symptom management needs, pain relief needs, emotional needs and personal wishes.
Not only will this plan indicate what should be happening now, it will also make contingency plans for when the condition adapts in future. Typically a team of doctors, nurses and other medical professionals will weigh in on this plan to ensure it offers a holistic approach to the person’s care, but if they are receiving care at home, their GP will oversee this.
Palliative care plans may cover things like the current treatments the person is undergoing, future plans for treatment as the condition progresses, needs of family members, medications for pain relief and symptom relief, preferences for home care, and more – the aim here is to make the doctor’s recommendations and the patient’s wishes clear for everyone involved to understand and follow.
Although it can be difficult to consider these things so early in the process, this is the best time to tackle practical elements of palliative care such as getting power of attorney and making an advance statement It is a good idea to deal with these things early so it does not become too late to gain input from the person who is approaching the end of their life.
As the Care Plan is being made, it may be a good time to ask questions like:
Although it can be a difficult conversation to have at such an early stage, it is also important to consider what should happen in the event that the person chooses to refuse treatment later in the process.
At this stage of the palliative care process, home care professionals can help by providing care for whatever the person’s condition requires. Whether specialist care for cancer is required, support for Alzheimer’s or another condition, or just some help around the home to relieve the family of stress during this difficult time, enlisting the help of a caregiver has many benefits.
Palliative care is designed to be a holistic approach to care that encompasses physical, psychological and spiritual elements in order to provide the most useful experience to the person receiving it. Before the later stages – and arguably more emotionally challenging stages – of palliative care commence, coming to terms with their illness and managing the psychological difficulties of chronic pain should be explored here in order to help the person manage their feelings.
Studies have found early palliative care for those diagnosed with advanced cancer led to a lower risk of depression, so providing emotional support throughout this process can be incredibly beneficial to the person and their family.
As is decided in stage 1, the Care Plan will be personalised to the person’s individual needs and wishes, so what this stage of the process looks like is entirely unique for each person. It may include difficult and clarifying conversations with loved ones, exploring the meaning behind pain and the diagnosis, making their desires for the future known, and more.
At this stage, it may be useful to consider asking questions like:
Whatever the person’s wishes are for palliative care, they can start to be explored here. For example, they may wish to seek the guidance of a spiritual or religious representative from their faith who can discuss how they are feeling and answer any questions they have about the unknown.
If the person is interested in trying complementary therapies, these may also be arranged. This could be things like music therapy, meditation or massage – whatever will help improve quality of life during this time. If they feel it would help, therapies or counselling can also be arranged to help with mental health and emotions during this strange time.
While the patient will be given plenty of opportunities to be alone if they wish to process emotions in private, the palliative care team will always be around during this stage to help with anything they would like to talk about, answer any questions, talk about fears or worries, and guide them through the process of discussing a difficult diagnosis with loved ones.
This can be a difficult stage of the palliative care process that evokes many emotions and requires families to spend time alone. However, often they feel comforted by having home care professionals visit their loved one’s home. This means the caregivers can take on certain tasks so the family can spend quality time with the person instead of managing these. This could be things like personal care activities (getting washed and dressed), housekeeping, specialist cancer care to support and coordinate medical professionals visiting the home, and more.
Two of the main aims of palliative care are:
For many people this means receiving palliative care in the comfort of their own home, and continuing with as many of their usual activities as possible while they are still able. Early-stage support means providing whatever support is needed to facilitate this.
In many cases, this could mean adapting a person’s home to include any equipment likely to become necessary, making sure the home is safe for them to move around in, and making everything easy for them to continue living independently. This could include things like grab rails, a walk-in shower, a ramp outside the front door, and more.
According to advice from Age UK, older people living in the UK can access the necessary home adaptations by contacting their local council to arrange a Care Needs Assessmentto determine whether they are eligible for certain types of care and support – this can usually be fast-tracked if they have received a terminal diagnosis.
If they meet the financial criteria, their local council will likely pay for minor home adaptations that cost less than £1,000. Major home adaptations that require building work can be more expensive, so they may need to apply for a Disabled Facilities Grant (DFG) if this is the case.
During the early-stage support phase, the following questions could be most helpful:
Community care nurses could be involved in care at this stage, but regardless of their involvement, home care can be used to support efforts to maintain the person’s typical activities at home.
The aforementioned stages can be relevant and useful for anyone undergoing palliative care who does not have a terminal diagnosis, however for those who do have a life-limiting condition or whose treatment has not been successful, the doctor in charge of their care may at this point discuss beginning end-of-life care.
Any resources and energy that has previously been focused on curing the illness will now be redistributed to prioritise making the person as comfortable as possible, managing their pain so they have the opportunity to die with dignity, and offering further emotional support as they come to terms with their prognosis.
If the person’s Care Plan includes an eventual move to a nursing home or hospice, this will happen in stage 4. If, however, the person has chosen to remain in their own home in the final months, weeks or days of their life, they can do so. Research suggests around 71% of people with a terminal illness make the decision to stay at home to receive palliative care, rather than being moved to a hospice.
At this point in the process, if conversations about wills, the person’s end-of-life preferences, and other logistical factors have not yet been discussed, these should be taken into account as soon as possible to avoid the person reaching a stage where they are no longer able to voice their wishes.
It can be helpful to use this time to ask questions such as:
Home care may become more vital around this time, and family caregivers can make use of things like respite care to take a break, or live-in care if more help is needed on a day-to-day basis.
It is extremely difficult to know when the final days and hours of someone’s life will be, and in many cases doctors will not be able to accurately predict this. One 2020 review of studies involving more than 11 million patients receiving palliative care during the end-of-life stage found that prior to passing away, the median duration of palliative care was 18.9 days. It was acknowledged, however, that the length of palliative care is often influenced by the health condition, the location and country of the palliative care, and other factors.
Some things that you can usually expect during this time include:
After someone passes away, the final element of palliative care is about providing bereavement support to family members and other loved ones, as well as support to get through the practical steps involved after someone’s passing. This might mean organising or pointing loved ones in the direction of local mental health services that can offer bereavement counselling, giving the family information on funeral directors and the steps involved in this, and carrying out any other final wishes mentioned in the person’s Care Plan. The family should be most involved in these steps, but palliative care workers can help to guide them in the right direction and be on hand to provide further support if needed.
At this time, family members may have questions such as:
When palliative care is carried out in a person’s own home, it is managed by a team of specialist doctors and nurses working alongside the family members and caregivers to provide a seamless palliative care experience that adheres to the person’s Care Plan.
With the help of counsellors, social care staff, physiotherapists, occupational therapists, complementary therapists, religious groups, charities, and anyone else that could provide additional support, palliative care can be effectively delivered at home in the same way that it can be in a hospital or hospice.
If you are in the process of arranging palliative care, or you have been recommended this by a doctor for yourself or a loved one, implementing home care can be a helpful addition to this process in order to take pressure off of the person and their loved ones during this difficult time, and complement the care provided by the medical team overseeing treatment.
If you or your loved one have been recommended palliative care, you may be wondering how this is funded and if you will need to pay for it yourself. There are many things you are probably worrying about at this time, so we aim to demystify the funding aspect of palliative care so you have all the information you need and can make the best choices for your situation.
Every year, around 56.8 million people (including 25.7 million in the last year of their life) require palliative care, and for many the cost of care can seem frightening, especially if you are facing a condition that requires an unclear length of treatment. However, understanding how much care may cost can help put your mind at ease about how much this might be for you, and how much may be funded from other sources.
In the case of palliative care at home, a number of services may be used to help you, for example you might benefit from home care workers visiting your home only a couple of times a week for companionship, or you may require live-in care that includes night care. Both of these examples will amount to a different cost.
According to Marie Curie, the typical cost of specialist palliative care (for end-of-life care) at home is around £145 per day. In many cases this may be less than the same care in hospital which is estimated to cost around £425 per day.
The cost of palliative care will depend on how much care you need, and the location of your care:
Ultimately, palliative care costs differ vastly depending on factors such as location, amount of care needed, and the specific type of care. Palliative care can mean a number of services, such as mobility equipment, home alterations, specialist care (for example, for cancer or dementia), night care, holistic treatments, and more.
In the UK, there are several ways to pay for palliative care at home:
Palliative care is usually provided by the National Health Service (NHS), which is free at the point of use for patients. Palliative care services may include things like medication, visits from healthcare professionals, hospice care, and other support services – all of these are typically covered by the NHS if you are in hospital or a hospice. If you want to receive palliative care at home, you may need to undergo a NHS Continuing Healthcare Checklist to access funding, but this is relatively simple.
Charities in the UK also offer funding and grants to those who need it, which could include access to hospice care too. These charities often receive their funding from public donations or government grants, and can help to support patients undergoing palliative care at home to make sure they have access to additional services and support resources they may not be able to access through the NHS or pay for themselves.
There are several options under the umbrella of self-funding palliative care at home, because not everyone can afford to fully self-fund their care, while others may be able to cover all costs.
With NHS Continuing Healthcare, you may be able to have your palliative care partially funded by the NHS, and top up the rest yourself, which is an option many people take. This usually happens if your capital amounts to between £14,250 and £23,250. In this case, you could still be eligible for financial support from your local council to pay for home palliative care, but you may also have to contribute from your own income too, for example from your pensions.
If you live in England and Wales, you may need to pay for your own home care if your savings and assets are above the means test threshold, which is £23,250 in England, or £24,000 in Wales. This means your income is likely to be high enough to cover the cost of your own palliative care, so you will usually be required to pay for this yourself.
If you are self-funding (or partially self-funding) your own palliative care, you may be concerned about how long this type of care will last, and as a result, how much this will end up costing.
As to how long this might last, it can be extremely difficult to establish how long someone’s care will last. Research has found patients with a serious illness who were given palliative care lived longer than those who did not receive this type of care, but further studies have found the length of palliative care is largely dependent on factors such as the type of condition the person has, where their palliative care is taking place, which country the patient lives in, and other factors.
A 2020 review of studies involving over 11 million patients receiving palliative care during the end-of-life stage found that prior to passing away, the median duration of palliative care was 18.9 days. However, in other cases palliative care for a terminal illness has been found to last anywhere from a few days to several months or over a year, so it is incredibly difficult to predict how long someone will continue to receive this type of care for.
If you are self-funding palliative care at home and you are running out of money, remember that if your capital drops to less than the £23,250 threshold in England (£24,000 in Wales), your local council may assist with continuing to fund your care. To action this, you will need to request an assessment from the council at least a few months before your funds sink below the threshold.
If you are self-funding your palliative care at home, there are a few ideas for how you can do this, including:
If you are unsure which option is the best one for your situation, you can speak to an accredited financial adviser from the Society of Later Life Advisers (SOLLA) who can usually point you in the right direction.
If you or a loved one needs end-of-life care, this can be a difficult and stressful time, and the last thing you need to be worrying about is how you will fund your home care, and whether or not your funding will come through in time. Here are a few things you should know about funding end-of-life care at home:
There are a lot of high emotions and stresses that can come with receiving palliative care, whether for a terminal illness or simply to manage your pain and symptoms. A good home care service will aim to help older adults retain independence and stay in familiar surroundings during this difficult time, and tailor the care provided to individual needs so that it helps make things easier, rather than just introducing another complication.