This is a demo site

Treatment Options planning ahead during the Coronavirus Epidemic

Provided by Hospice UK

COVID-19 is having a huge impact on us all. It's changing the way we live. We know most people who catch the virus get better. We also know some people become very ill, and some of them die. It's natural for us to worry about ourselves and the people we love.

When people become very sick, it's important that the care they are given is the care they would wish for. That's why everyone is being encouraged to think ahead about what treatments they would accept, and where they would prefer to be cared for. This is important for everybody, and we would encourage everyone to think about it.

We know that some people are more likely to become seriously ill if they catch the virus: this includes older people, and people who already have problems with their health. GP practices will be contacting everyone in these higher-risk groups, and a doctor or nurse will talk to them about their options, answer their questions and record their preferences for treatment. This includes discussing the treatment options they would prefer if they were dying.

It may feel scary to be contacted by your GP to talk about serious illness and dying. Being contacted doesn't mean you are more likely to catch the virus, but we know people in this group may become sicker than other people if they catch it. Talking through the options with your medical advisers in advance means you can be more confident that your preferences will be taken into account if you become very ill.

This tool is designed to take you through the sorts of treatment decisions your doctors might need to make if you become seriously unwell with COVID-19 or with another illness during the epidemic. By working your way through these pages before you talk to your doctor or nurse, you will have the chance to think about some of the important decisions that may need to be made, and to talk to your loved ones about them if you wish.

As you work through the pages, you can select preferences if you wish, or just choose 'I haven't decided yet.' The tool is about people in general, not you in particular. So after you have used this site to think these decisions through, we'd advise you to talk to your doctor or nurse about your own health and how these decisions might affect you. No preference is legally binding. You can change your mind at any time.

Unless you tell them, your medical team or your loved ones will not know your preferences. When doctors ask loved ones what a person's views are, they may try to guess - and often guess wrongly. It's wise to make your trusted friends or family aware of your preferences.

Choose 'Get started' to think ahead before you talk to your medical advisers. If you like, chat to a trusted person as you go through the next few pages.

Our website won't collect any personal information about you, it will simply help you to think about some important decisions you can make about your care now, in case you become unwell in the future.

You will remain completely anonymous to us. We will ask for no personally identifiable information from you. We anonymously track popularity of selections and progress throughout the site using cookies. This helps us understand if the site is useful and where to make improvements. You will have the option of saving a copy of your preferences for your own purposes. If you close your browser your preferences are lost.

Get started

Hospital / Home

Many of us will catch the virus at some point.

We may have a rough week or two before we get better.

Many of us will struggle with a virus-induced lung inflammation that we may be able to cope with at home. We'll cough, we'll have some breathlessness and it sounds like it hurts, too. But we'll get through.

Some of us won't be able to breathe well enough to get all the oxygen that we need.

This is when thinking about the options ahead of time starts to become important, because low oxygen levels in our blood makes it hard to think clearly. It becomes hard to stay awake. If that happens to us, we might not be able to make big decisions.

Those with severe symptoms still have options:

Remember

Symptoms may be caused by other illnesses as well as COVID-19. It may be that a trip to the hospital is needed for tests that can show what treatment you need.

Going to the hospital

People who agree to go to hospital during the epidemic will probably have to be away from loved ones. Visiting will be restricted or even banned to preserve the health of staff and other patients, although a Personal Assistant will be allowed for specific people e.g. assistants who support people living with physical or intellectual disability, sign-language translators.

Hospitals would use the same drugs as at home to manage symptoms. Hospitals can offer extra options, including oxygen by mask, oxygen by high-pressure mask (CPAP) or full ventilation with a tube down the throat and care in an Intensive Care Unit (ICU). These might be life-saving treatments. Hospital care won't be able to save some people's lives but it will offer good symptom control, even for people too sick to survive.

Being in hospital has the advantage of being surrounded by professionals to care for you. One person (a family member or friend) will be allowed to visit and sit with anyone who is thought to be dying.

Staying at home

People who prefer to stay at home can still have medications to ease their symptoms. You can have those medications at home, keep your loved ones around you (2 metres mostly, closer for helping you move, giving you care, then wash hands and back off again) so at least you are with each other. In some places, family and friends may be trained to give the medicines needed, particularly if the community nursing services are trying to care for many more people than usual.

Staying at home has the advantage of familiarity, but life-saving treatment options are more limited at home.

Some people who want their family around them may prefer to stay at home, even if they are seriously ill, and accept the increased risk of not surviving.

Living alone

People who live on their own may not have anyone at home to support them. If they are very unwell but don't want to go to hospital, it may be possible to provide care and support in other ways. Sometimes paid or volunteer carers can support you in your own home, or it may be possible to arrange admission to a Care Home or a Community Hospital where you will be looked after and cared for in a similar way to being at home.

Visiting will be restricted or even banned to protect staff and other residents. There would be more practical help, but treatments would be like at home, not like in hospital. Life-saving treatment options are more limited in community hospitals and in a Care Home than in hospital.

What would you prefer?

These preferences are not legally binding. You can change your mind at any time.

If I was so sick that I might die...

If it becomes certain that I am dying...

Ventilation

Remember

Most of us will get better from COVID-19. Most of us won't need a hospital stay. But some of us will become so sick from COVID-19 or from another illness that dying is possible, and at that point we may be too unwell to tell people what we want.

Not everybody will be offered ventilation, even if they are getting so sick their life is under threat.

Here's how it works:

If a ventilator could save your life, then the Intensive Care Unit (ICU) doctors will offer you a ventilator. That would mean being sedated (made unconscious), having a tube inserted down your throat into your windpipe (through mouth or nose), and a ventilator machine would be attached to the tube.

If a ventilator could not save your life, because you were clearly dying, then you would not be offered a ventilator. This is more likely to happen to people who were already unwell with other conditions.

Ventilation in particularly sick patients may cause the following problems:

  • They may never be able to breathe sufficiently again without a ventilator. Some people become well enough to live independently at home using a ventilator after a period of rehabilitation in hospital.
  • They may manage to get off the ventilator, but be so damaged by their prolonged illness in the Intensive Care Unit that it will have a permanent and serious impact on them.

For these people, it's really important for the ICU consultant to know whether the patient would accept that risk. But the patient might not be in any fit state to discuss it.

What would you prefer?

These preferences are not legally binding. You can change your mind at any time.

If a ventilator would pose a significant risk of surviving with life-long after effects...

CPR

Remember

Most of us will get better from COVID-19. Most of us won't need a hospital. But some of us will become so sick from COVID-19 or from another illness that dying is possible, and at that point we may be too unwell to tell people what we want.

What is CPR?

Here's an explanation of what Cardiopulmonary Resuscitation (CPR) is, when it can be an effective and life-saving treatment, and when it won't be helpful or may even be unwanted.

CPR is First Aid for when a heart stops unexpectedly.

When someone's heart stops suddenly (cardiac arrest), while the rest of their organs are all still working, then CPR started straight away gives them a chance to stay alive.

Without its oxygen supply, the brain will die in six minutes. CPR keeps the blood circulating by repeated, high pressure compressions on the chest, that continue until the heart can be re-started, or until it is clear that the heart will not restart.

If someone is otherwise well, has relatively healthy organs and their heart stops suddenly and unexpectedly, then CPR may save their life. The healthiest people have around a 10% chance of surviving (slightly higher if they are already in hospital), although many won't ever be well again.

If you were otherwise well, and then had a cardiac arrest, would you choose to have CPR? If you would, that's no problem. People who know how to do CPR will always start first (seconds matter, remember) and ask whether this person would want CPR later.

If someone doesn't want CPR for any reason, then they have the right to refuse in advance. They can make an Advance Decision to Refuse Treatment (covered later) but for rapid advice in an emergency they also need their doctor to make a Do Not Attempt CPR order (DNACPR) to tell people not to begin CPR.

Having a DNACPR order doesn't change any other treatment options. People with DNACPR orders will still be offered treatments like IV drips, antibiotics, Intensive Care Unit care, if those options would be helpful for them.

Why do some people not want to receive CPR?

If CPR succeeds in restarting someone's heart, they may not die but they may be permanently damaged. This includes brain damage. If you think you wouldn't want to take the risk of surviving an unexpected cardiac arrest with very serious after effects, you may decide you wouldn't want CPR to be started.

You've probably never even thought about that possibility. But in this time of heightened awareness, lots of us are thinking about things in a new way.

If you wouldn't want CPR, it's your right to refuse it. But you won't be able to refuse it at the point it might be needed, because you'll be unconscious within seconds of your heart stopping. You need your doctor to provide a DNACPR order to tell people not to start CPR.

What would you prefer?

These preferences are not legally binding. You can change your mind at any time.

If my heart stopped suddenly and unexpectedly... (CPR might save a small proportion of people)

When CPR is unlikely to succeed

Some conditions can make it very unlikely that CPR will help.

If someone has long-term organ damage and then they develop a sudden problem that stops their heart, then it may be that their damaged organs can't survive a cardiac arrest no matter how promptly CPR is started.

This applies to a variety of health conditions that many people already live with, even though they feel well enough from day to day.

For example, if someone has very weak bones, they could not survive the chest compressions of CPR. Or if someone's heart or lungs are already weak from a long-term disorder, they may be damaged beyond repair during a cardiac arrest.

Could this situation apply to you? You would probably only know that if your doctor or nurse discussed it with you. Your doctor or nurse can tell you if your health problems make CPR unlikely to be an effective treatment for you.

People who are unlikely to be helped by CPR can be protected from it. A DNACPR order can be made by your doctors if CPR would not help you. The doctor is obliged to tell you if a DNACPR order is made for this reason, unless you say you don't want to be told.

Every DNACPR decision must be weighed up carefully by the doctor, in discussion with the person if they want to be told. It must be a decision that respects the quality of life the person enjoys, regardless of any disability they currently live with. A DNACPR order cannot be made for a group of people: every single person must be considered individually.

What would you prefer?

These preferences are not legally binding. You can change your mind at any time.

If I had a condition that made it unlikely that CPR would help me...

When CPR is undesirable

For someone who is already clearly dying, CPR will not help.

If someone is so sick that they are close to death, then a series of things will happen.

The vital organs all get weaker and less effective. The body gets wearier, and the person begins to experience periods of becoming unconscious. Gradually, they lapse into permanent unconsciousness as their brain begins to switch off all its activity. And finally, their breathing will slow, and gently stop, and then their heart will stop. This is the process of ordinary dying, and it's pretty much the same sequence whatever it is that we die of.

In this situation, we are talking about dying. The heart stops last. Everything else has stopped. The heart can't be re-started. CPR will not change anything. It will not rescue someone from anticipated dying. CPR is not a treatment for them now.

So why would this person need a Do Not Attempt CPR (DNACPR) order?

Well, the difficulty is that health care staff, and paramedics, may only meet someone at the point where they are very close to death.

They may not be aware that this person is already dying, that their loved ones anticipate their imminent death, that their goodbyes have been said and they are hoping for that gradual, peaceful end of life.

So without a DNACPR order, they may leap into action – loved ones out of the room, compressions and electric shocks on the chest, the whole works. Most people don't want that to happen to them in their last moments.

A DNACPR order is our protection certificate at the end of life. It really means 'Allow Natural Dying' in these circumstances. If this applies to you, you can discuss it with your medical team. Your doctor can then issue a DNACPR order for you.

Continue

Managing symptoms

Managing symptoms when experiencing pain, breathlessness, anxiety or agitation.

If someone is very unwell and their illness is causing symptoms like pain, breathlessness, anxiety or agitation, then their doctors can prescribe medicines that reduce their symptoms. The medications that reduce these symptoms may cause drowsiness in some people.

Sometimes this is welcome; the person feels relaxed and sleepy.

Sometimes this isn't welcome, because the person wants to be as awake and alert as possible, even though this means putting up with uncomfortable symptoms.

What would you prefer?

These preferences are not legally binding. You can change your mind at any time.

If I had pain, breathlessness or anxiety that made it difficult for me to be nursed comfortably in bed...

Agitation is a combination of anxiety, restlessness and a sense of feeling muddled.

It can be very distressing for the person and also for their companions, who find it difficult to communicate while the person is agitated.

It can be hard to settle agitation without giving enough medication to send the person into a peaceful sleep. The drugs are deliberately sedating, because using a lower dose can make the person more confused but still awake. This is often even more distressing to them.

What would you prefer?

These preferences are not legally binding. You can change your mind at any time.

If I became agitated while I was unwell...

Life / Comfort

Balancing your preferences

You might like to make an overall decision about the balance your doctors and nurses should strike between efforts to save your life no matter how much discomfort it might cause you, and efforts to keep you as distress-free as possible, even if this means not using some life-sustaining treatments.

What would you prefer?

These preferences are not legally binding. You can change your mind at any time.

When balancing treatment decisions between my length of survival and my comfort, I would prefer to focus on...

Your summary today

Thank you for considering these important subjects.

Remember

Unless you tell your doctors or your loved ones, they won't know your views. The decisions you have made show your current preferences. You might change your mind in the future, and that's fine. You might decide differently after you have had a chance to discuss your preferences with your doctor or nurse.

During the COVID-19 pandemic, general practices will be getting in touch with some people to discuss these kinds of preferences. This will include you if you are aged over 70, or if you have a long-term physical condition like diabetes, or a condition that affects your heart, lungs or kidneys. We hope that using this tool has given you some helpful information and enabled you to start considering your own preferences. A conversation with your doctor or nurse will be able to answer any questions the tool has brought up for you.

We recommend that everybody has a conversation about these preferences with their medical advisers. Most of us won't die, or even be very sick, with COVID-19. But all of us, one day, will reach the end of our life.

Thinking through our preferences about medical treatments is part of a bigger process of thinking about how to live the last part of our life well. That includes what support we might need; who will look after us, and where; how we will maintain our cultural, religious and spiritual values; how the things that matter most to us will be provided, from people or pets to music or meals. That bigger process, including the medical treatments this tool discusses, is called Advance Care Planning. People who take up the offer of Advance Care Planning are more likely to say they have better quality of life, to live in the place they wish, and to spend less time in hospitals, than people who haven't planned ahead in this way.

You might want to consider making some legally binding arrangements. This would ensure you can refuse any treatments you are already certain you would not want. And you can choose people to speak for you legally. No-one can speak for you unless you complete the legal forms. If you'd like to do this, or to learn more, click the 'Making it legally binding' button.

Making it legally binding

If you would like to go further, and make legally-binding decisions to refuse any type of treatments, you can make an Advance Decision to Refuse Treatment. These are legally binding in England and Wales. In Scotland the law is different but it is likely that an ADRT would be respected. More information, and links to websites that will help you do that can be found on the NHS website. We recommend you discuss this with a doctor or nurse who knows your health circumstances before you make this decision.

Or if you prefer, you can nominate one or several people you trust, whether family or friends, to have Lasting Power of Attorney (LPA) for Health and Welfare (in England and Wales) or Welfare Power of Attorney (PoA) (in Scotland).

If you lose capacity to make decisions either temporarily (e.g. becoming too unwell to stay awake) or permanently (e.g. developing a condition that interferes with your thinking), then they can make medical decisions on your behalf. They can be helped to make the choices you would prefer if you discuss your preferences with them.

Nobody else can make medical decisions for you, not even your next of kin, unless they are your registered Lasting Power of Attorney (LPA) / Welfare Power of Attorney (PoA). This process takes time: up to months in England and Wales, faster in Scotland. More information and relevant application forms:

England and Wales

Scotland

(There is no legal LPA system yet in Northern Ireland)

If there are medical decisions about your treatment in the future, and you aren't well enough to join in the discussions, your loved ones can use these preferences of yours to help the doctors make important decisions about your care. If you have legally appointed someone to speak for you (LPA/PoA) then they, too, will find this record helpful. They want to follow your wishes as much as possible when they make decisions on your behalf.

You can easily save a copy of the preferences you have chosen today by clicking below.

Your summary

Here is a full summary of your preferences today for you to save. Please talk about these preferences with your family or loved ones. If you become ill, they may be asked about your preferences and this record will be a great help to them.

You may worry that discussing these preferences might make them feel sad. And it might. But they may feel far sadder not to be able to tell your doctors about your preferences if that's needed in the future. This is a way for you to help them at a very difficult time for all of you.

These preferences are not legally binding. You can change your mind at any time.

You have not yet provided any preferences

Download my preferences

Print my preferences

Sharing your preferences

Please share your preferences with your loved ones and health care team. We've tried to make it easy for you to save these decisions so that you can refer to them at any time.

Contact your General Practitioner (GP) surgery if you'd like to talk through any of these issues.

During COVID-19, GPs will welcome an opportunity to discuss these kinds of preferences with you, and they can help you to apply the information here to your own circumstances.

Thank you

Thinking about these important ideas now will help you to be confident that your values and preferences will be included, when medical decisions are needed in the future. Even if the medical options are limited depending on how sick you are and what treatments might help, your doctors will want to make decisions that respect your wishes and preferences.

About us

This tool has been developed rapidly by a small group of IT and medical experts in response to an urgent need triggered by the covid-19 pandemic; it has not had the robust piloting usually associated with a public-facing tool of this kind, but every care has been taken to elicit some end-user feedback and feedback from experts in ethics and the law. It has been designed to be accessible on the website(s) of participating organisations, who will 'own' it. Links can be shared and advertised in social media and other communications. The tool will not collect or store personal information.

During the Covid-19 pandemic, it has become necessary to prioritise Advance Care Planning with physically vulnerable adults in order to ensure that medical decision-making for our sickest patients is in accord with their values, wishes and, where they have declared them, any advance decisions they may have made.

This tool is intended to walk non-medical users through some of the more challenging clinical decisions that may be required should they become seriously ill with the covid-19 virus. Although prepared in the context of possible covid-19 infection, the premise of the decision-making would apply in any other circumstances where life is under threat and delicate decisions need to be made.

Engaging with the tool will provide opportunities or encouragement for users to:

  • Gain useful information about some of the medical decisions that can be thought about in advance, including preferences for staying at home or accepting hospital care; the balance they would prefer about life-sustaining versus symptomatic treatment; an introduction to when CPR is an appropriate or unhelpful intervention; and a consideration about the use of supported ventilation and ICU.
  • Consider their own preferences and ideas about serious illness and the way they would want to be looked after.
  • Express preferences about options for management, with an option for 'I haven't decided yet' for each set of options.
  • Discuss the information provided, and their thoughts about it, with family or friends.
  • Discuss the decision they have made, or the questions the exercise has triggered, with their medical adviser.
  • Access the UK Government websites that will support them to appoint a person or people to act for them as a legally-appointed Attorney, should they wish to do so.
  • Access UK websites that will support them to prepare an Advance Decision to Refuse Treatment, should they wish to do so.
  • Provide a permanent record that they can keep, share with family/loved ones, sign and date, that can be referred to in the future should they become too unwell to discuss their preferences about treatment options if there is no-one with LPA and no valid or applicable ADRT to guide decisions.

Contact us

For more information or question please email [email protected]

Privacy and cookies

We are using Google Analytics to anonymously record activity on the site. They use cookies to do this. The cookie remains on your machine but your selections are forgotten when you close your browser.

We don't ask for, store or share any personally identifiable information. Users remain completely anonymous to us and Google.

We anonymously track progress throughout the site including, options selected, pages reached and buttons and links clicked to help us improve this service.