End of Life Care

1. Advance Care Plans

Emergency Health Care Plan
An Advance Care Plan, also known as an Emergency Health Care Plan (EHCP), is a document that helps ensure you receive the medical care that you want when you need it most. It includes details about your treatment preferences, ensuring that healthcare providers understand your wishes.

For example, if you use a home ventilator, your Plan will outline the specific treatments you would wish to have and where you prefer to receive care. It’s a way to empower you, your carers, and your healthcare team to make informed decisions about your health.

Importantly, your Plan does not replace other important documents like do not resuscitate (DNR) form or an Advance Statement (see below for more information). Instead, your Plan works alongside these documents to provide a detailed picture of your healthcare preferences.

Your Plan is kept with you, whether that’s in your district nursing notes at home or in your care home records. To make sure it is easily found during emergencies, it’s often kept in a yellow envelope. Copies are given to all relevant healthcare professionals involved in your care Plan is created in the hospital, it’s saved in your electronic patient record.

Lasting Power of Attorney
A Lasting Power of Attorney (LPA) is a legal document created under the English Mental Capacity Act 2005. This document is there to help you plan for the future, especially if there might come a time when you can’t make decisions for yourself anymore.

There are two main types of Lasting Power of Attorney: one for your health and welfare, and another for your property and financial matters. You can choose to create either or both, depending on your needs and preferences.

The Lasting Power of Attorney lets you appoint trusted family members or friends to make decisions on your behalf if you become unable to do so yourself. It’s like giving someone the authority to step in and look after your interests when you’re not able to manage them anymore.

Advance statement
An advance statement is a way for you to describe your wishes and preferences about future care, should you be unable to make or communicate a decision or express your preferences at the time. You may want it to reflect religious or other beliefs and it can also include other important aspects of your life, such as food and drink preferences, type of clothes you like to wear or whether you prefer a bath or a shower. You can say who you would like to visit you, or to be consulted about your care. It is helpful to write this information down, so people can refer to it if they want to know what you like and what is important to you.

An Advance Statement isn’t something that someone else can make for you. It only comes into effect when you’re not able to express your wishes anymore, but sometimes it can be helpful to talk to professionals, family members, or caregivers about it.

While an Advance Statement isn’t legally binding, it’s still really important. It allows your family and carers to know your wishes about your care such as where you want to be when you need care, your preferred routines and any religious beliefs. Family and carers will try to follow these as closely as possible if you’re not able to speak for yourself.

Treatment Escalation Plan
A Treatment Escalation Plan is a document that outlines personalised goals for your treatment. It’s made specifically for you by your health care team and reflects what matters most to you if your condition gets worse and you are not able to speak for yourself.

The Treatment Escalation Plan is about making sure that the treatment you receive aligns with your values and preferences. The clinical team looking after you will discuss this with you.

  • Do Not Attempt Cardiopulmonary Resuscitation form

The Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) form means that if your heart or breathing were to stop, your healthcare team will not try to restart it.  This form may be called a Do Not Attempt Resuscitation (DNAR) or Do Not Resuscitate (DNR) form.

This decision is made by you, your doctor, or your healthcare team. It’s recorded on a special form. Different doctors or hospitals might use different forms, but they all serve the same purpose.

These forms are easily recognised by doctors, nurses, and other healthcare workers, so they know what to do in an emergency.

Your Do Not Attempt Cardiopulmonary Resuscitation form is kept in your medical records. It may also be printed and kept with you if you are at home or in a care home. It is important that you, and the people important to you, know that this form is in your medical records.

 A Do Not Attempt Cardiopulmonary Resuscitation decision is about cardiopulmonary resuscitation (CPR) only. It doesn’t mean that you won’t get other care or treatments. You will still receive all the appropriate care, treatment and support you need.

Advance Decision to Refuse Treatment (sometimes called a living will)
An Advance Decision to Refuse Treatment (ADRT) or living will is a document that you create when you’re able to make decisions for yourself. It becomes active only if you’re unable to communicate your wishes in the future.

A living will is used to refuse life-sustaining treatments, like stopping home mechanical ventilation. There is no specific form for this. However, to be legally binding, this document needs to be written down, signed, witnessed, and clearly states the treatments you refuse and the circumstances under which you refuse them. It must also include a statement such as “I refuse this treatment even if my life is at risk.”

Once created, an ADRT has the same legal effect as if you were able to express your wishes yourself. However, it may not be helpful in emergency situations that require immediate treatment, as there may not be enough time to locate the document and confirm it meets the above requirements However it should be followed when time allows.

2. What is Palliative Care?

You will be seeing doctors who treating your lungs or other conditions. There’s another team of healthcare professionals called the palliative care team. Their main goal is to help you cope with the symptoms of your illness, both physically and mentally.

The palliative care team are experts at managing a range of difficult to control symptoms to help improve your quality of life. They work alongside other doctors who are treating your illness. For example, while your respiratory doctor might give you inhalers and antibiotics, a palliative care doctor can help you manage your breathlessness.

Some people receive palliative care support in the last year of their life, but others see the palliative care team for several years, especially if their symptoms are difficult to manage.

If you’re worried about money, the palliative care team might be able to connect you with someone who can help. If are near end of life, you can ask your GP, palliative care doctor, or specialist nurse for a SR1 form. This form can help you get faster access to government support and possibly higher payments for certain benefits. Your healthcare team will help you complete and submit this form.

As you spend time with the palliative care team, you’ll build a relationship with them. Some people stay in a special unit called a hospice to help to control their symptoms. Most people are able to go home once their symptoms are under control. Some people choose to spend their final days at home. The palliative care team can help make that happen by providing care at your house.

3. Symptom Control

Once you’re referred to the palliative care team, you’ll meet with a specialist doctor or nurse. They might see you at a clinic, visit you at home, or see you in the hospital. Their main focus is on helping you feel better by managing your symptoms.

The goal of the palliative care team is to make your symptoms easier to handle so you can spend your time doing what you enjoy the most.

People come to the palliative care team with all sorts of symptoms they need help with. Some of the most common ones include:

  • Feeling out of breath or having shortness of breath
  • Dealing with pain
  • Managing excess saliva or phlegm
  • Coping with feeling sick or nauseous
  • Easing muscle tightness and cramps
  • Handling feelings of anxiety or sadness
  • Addressing worries about the future
  • Managing side effects from medications

The palliative care team will work closely with you to tackle these issues. They’ll use a combination of techniques, including relaxation methods and emotional support, along with both medicine and non-medicine approaches. They might give you different types of medication, some that work quickly and others that work over a longer period, to give you better symptom control.

4. Home Ventilation at the End of Life

Decision to continue with HMV at end of life
Whilst some people make the decision to stop using home mechanical ventilation as they approach the end of life, other people may want to keep using the ventilator as it might help with symptoms such as breathlessness.

If you choose to continue using your ventilator as you approach the end of life, it is important that your family members know they may witness your chest continuing to inflate and deflate, as though you are breathing. This is because the ventilator will continue to work, even after you have died.  

Request to stop / withdraw home ventilation
Some people using home mechanical ventilation may decide they no longer want to use it if they feel it doesn’t improve their quality of life. If you find that using the ventilator becomes difficult or you no longer feel the benefits, you can start a conversation about stopping treatment. Your healthcare team will guide you through this process, and the timing will depend on your wishes and your situation.

When someone stops using home mechanical ventilation, they may experience severe breathlessness. So, it’s important to plan and manage the process carefully so that any symptoms that arise are managed.

The decision to stop using home mechanical ventilation should be thoughtfully planned and involve discussions with you, your family, and your healthcare team. It’s important to have open and honest conversations about your wishes and the best way to support you.

This decision can include:

Shared decision making to discuss your choices
Shared decision-making means that you, your family, and your healthcare team work together to make choices that are best for you. When it comes to deciding whether to stop using your home ventilator, it’s a personal decision that involves you, your family, and your healthcare team.

Here’s what these discussions might involve:

  1. Exploring options: Your healthcare team will talk with you about your thoughts and feelings regarding your home ventilator. They’ll help you to understand the different options available if you decide to stop using it or if it’s no longer working for you.
  2. Understanding the decision: Your healthcare team will also explain what will happen if you choose to stop using the machine. This will include discussing any changes in your symptoms or quality of life.
  3. Considering your values: Your values and preferences are important in making this decision. Your healthcare team will take these into account to ensure that your decision aligns with what matters most to you.

It’s helpful to discuss your plans for the future and explore alternative options for managing your breathing with your healthcare team.

While home mechanical ventilation can often improve symptoms and help you live longer, if you’re discussing end-of-life planning, your home ventilator should be part of the conversation.

Deciding and planning withdrawal of treatment
It’s crucial to have discussions with the healthcare team members who are managing your condition and your ventilator. Working together as a team and communicating openly with your family can help plan safe and effective care tailored to your needs.

During these conversations, you might also want to talk to other healthcare professionals who can offer additional support, such as psychologists or palliative care specialists. These teams are here to assist you in making decisions that are right for you.

If you’ve already had these discussions, you might have an advance decision document in place that outlines your wishes regarding stopping treatment. Your healthcare team will ensure you understand the pros and cons of any decision you make. They’ll give you time to reflect on your decision and have further discussions with your loved ones.

If there are concerns about your ability to make decisions about stopping home ventilation and you don’t have an advance care plan, a healthcare professional may assess your capacity to make these decisions.

Discussions about stopping home ventilation are ongoing and involve regular sharing and reviewing of information. If you decide to stop your home ventilation, you and your family will need to plan when, where, and how this will happen with the support of your healthcare professional.

Talking about potentially stopping home ventilation can be emotional for everyone involved. It’s important to understand that stopping this treatment allows your underlying medical condition to progress naturally—it’s not the same as euthanasia. Remember, you have the right to stop treatment if you choose to and have the capacity to make that decision.

Stopping home ventilation and symptom management
Depending on how much you rely on your home ventilation—whether it’s just at night or all the time—and the symptoms you experience, your healthcare team will tailor a plan to your needs

Your healthcare team will discuss the symptoms that may arise when you stop using the ventilator. It’s best to talk about and plan for these possibilities ahead of time. This way, you can take steps to manage them effectively and prevent any distress for you or your family. Without the ventilator, you might experience breathlessness, so stopping ventilation needs careful planning to ensure you and your family feel supported while managing all your symptoms.

If you only use the machine at night:

After discussing with your healthcare team, you can stop using it at night. Since you haven’t been using it during the day, you might not notice an immediate change in your symptoms. However, over time, you may feel more breathless. Medication can help manage these symptoms.

If you rely on the ventilator all the time:

If you use the machine constantly, your healthcare team will help you plan when and how to stop using it, and who you want with you during this process. An experienced member of your healthcare team will support you. You might stop the machine and remove the mask or tubing, using medication to make you more comfortable. Alternatively, the settings and backup rate of the machine may be gradually reduced, providing less support while using medication to manage any symptoms you experience.

When it comes to medications, you have the flexibility to plan which ones you want to use. You can discuss with your healthcare team which medications might work best for you. Depending on how you feel or what your healthcare team suggests, you may have the option of trying different treatments or medications.

If you’re already taking some medications, you might need a higher dose when you stop using home ventilation. Your healthcare team will help adjust your medications to ensure you remain comfortable and manage any symptoms effectively.

Route of medication administrations
You can get your medicine in two ways:

  • Subcutaneously: This means the medicine is injected beneath your skin.
  • Intravenously: This involves inserting a needle into your vein to deliver the medicine directly into your bloodstream.

However, intravenous administration may not be available in all healthcare settings.

To ensure you receive a constant supply of medication, a special pump may be used. This pump delivers the medicine at a steady rate, and it can also provide extra doses if needed to keep you comfortable.

Types of medication

  • If you feel breathless, you may be given some medicine called opioids. For example, Morphine, a commonly used opioid, can be used to manage breathlessness. Occasionally you may be given oxygen via a mask.
  • If you feel anxious, you may be given a drug called a benzodiazepine. For example, Midazolam is a benzodiazepine that can be used to help manage anxiety and distress.
  • If you have secretions, you may be given a drug such as Hyoscine. Hyoscine may be used to managed excessive respiratory secretions.


After home ventilation has been withdrawn
Once the ventilator has been stopped, you might need additional medication to help manage your symptoms. These medications can be adjusted as needed to keep you comfortable during this time.

If you rely on the ventilator, it’s likely that you’ll die shortly after it’s withdrawn. However, in some cases, this process may take longer.

After you have died, your family will have the chance to talk about their experience, if they wish. This is known as a debriefing. Bereavement support will also be available for your family if they want to access it.

  1. Frequently asked questions about stopping home ventilation.
  2. What does withdrawal from my home ventilator mean?
  3. This refers to the process of reducing and stopping the support you are receiving from your ventilator.
  4. What if I do not want to stop?
  5. If you are still feeling the benefits of using your home ventilator and are happy with how you are feeling, then you should continue to use it as directed.
  6. How long does it take to plan?
  7. It is best to start the conversations about use of the home ventilator early, to ensure that you have time to decide what you wish. It is easier to plan for things when you are well. However, stopping home ventilation can be discussed at any point.
  8. How will I know what medicines I might need for my symptoms?
  9. Your health care team will talk about all possible symptoms and help plan for each of them. They will also know of other symptoms that you may experience and plan for that as well.
5. Frequently asked Questions

Questions you may wish to discuss with your healthcare team about end of life care

  • If I’m told I’m at end of life, how long does it mean I’ve got left?
  • Will I remain in control of decisions about my healthcare?
  • Can I decide if I no longer want home mechanical ventilation?
  • What will my carers/family have to do?
  • How will you warn my family of what changes to look for?
  • Will I stop being able to communicate even if I am still breathing?
  • What sort of medications will I receive?
  • Do I need to keep using? Can I decide to keep using it or not ‘towards the end’?
  • Can I change my mind at any time?
  • Do they actually want to know it’s “end of life care”?    
  • What help is available?
  • Will my medication continue? 
  • What happens when I find eating / drinking and everyday care becomes more difficult? 

Questions for the patient/carer/families to consider:

  • Where does the person using home ventilation want to be at end of life?
  • Who do they want to be with them, including pets?
  • Who do we need to tell?

Questions a carer might ask:

  • What support can I get?
  • Should I inform my work?
  • Is respite care available? 

End of Life Care: Insights of a Carer