Resources for end of life planning
At Friends at the End, our focus is on the health and wellbeing of people’s whole lives.
People who access our support, resources and services for end of life care planning have told us that they find the term ‘care’ disempowering. The feel it is labelling them as recipients of care, rather than equal citizens. We adopt a human rights-based approach to all of our work and put the person (not ‘patient’) at the centre.
What do you need information about? You can find more information about these topics below:
Advance Care Planning
Advance Care Planning is making decisions about the healthcare you do or do not want at the end of your life. This involves talking to your family, friends, and health or social care professionals you see regularly, for example, your doctor or nurse.
You may wish to discuss the following with your healthcare professional and your loved ones:
- your concerns
- your personal values / your personal goals
- your understanding of your illness and the expectations you have for how it might progress over time
- any preferences you have for the type of care or treatment that might be beneficial in the future, and whether these preferences are likely to be available
Further information about Advance Care Planning is available here:
At Friends at the End we provide a free service to support people to put end of life care plans in place. This can be via providing information and resources or on a 1:1 basis depending on what people prefer. These include Advance Directives/Decisions, Advance Statements and Powers of Attorney.
An Advance Directive (or Advance Decision in England and Wales) is a formal document which enables you to refuse life-prolonging medical treatments or interventions, in the event where you cannot refuse them at the time. For example, because you are unconscious following a stroke, heart attack or car crash.
Many people are sure they would not want to be kept alive in a long-term coma-like state. A recent YouGov poll showed that 82% of people have strong views about their end-of-life treatment but very few (only about 4%) have made an Advance Directive/Decision.
Many people falsely believe that family members can make health care decisions on their behalf. In reality, decisions are made by your medical team and must be done in your ‘best interests’. This is the case unless you have written an Advance Directive/Decision or appointed an Attorney to act on your behalf.
Having end of life plans in place is of great benefit to everybody. Consider if you became ill, or were in an accident and lost the capacity to communicate. The doctors would have to act in what they believe is your ‘best interest’, but this may not be what you wanted. Having plans in place will inform doctors of your wishes and your human rights will stand a much better chance of being respected, protected and fulfilled.
It provides peace of mind for all to know that doctors have a blueprint in place to guide them. These plans empower healthcare teams to act in a way which fulfils that person’s values. It also frees families and relatives from the pressure of having to make critical medical care decisions, especially while they are under stress or in emotional turmoil. Research shows that patients and their families report significantly less stress, anxiety and depression when an end of life plan is in place. It allows people to retain control of their decision making. It gives comfort and reassurance, contributing to the overall wellbeing of all involved in your care and welfare.
Further information can be found below:
Putting off, or deferring end of life planning is a common problem. Many people find it emotionally difficult to talk about death and dying. People often do not know how to access or prepare this documentation, or where to begin, especially older people who are not IT literate. Another issue is the cost of obtaining professional help in producing them.
How we can help
Our CEO is qualified to postgraduate level in Medical Law and Ethics and our board of trustees is comprised of medical and legal professionals, academics and an MSP with a nursing background. Thus, we have the expertise at FATE to sensitively support people to prepare for their end-of-life.
Ordinarily, we work with people on a 1-1 basis and via our network of local groups. We also run Advance Directive workshops and maintain contact via our telephone advice line, email and video conferencing. Please get in touch with us if you require help.
Do Not Attempt Cardiopulmonary Resuscitation Order (DNACPR)
A DNACPR is a legal document which tells any medical team not to attempt CPR in the event of cardiac arrest or heart attack. You should be fully informed about CPR and its likely benefits to you. We strongly recommend that you discuss this with your healthcare team before completing such a form.
When there is some chance that CPR may bring someone back from cardiac arrest, and to a length and quality of life that they would want, they should be offered:
- The chance to be given clear and accurate information about their condition and the likely risks and benefits from CPR if they should suffer cardiac arrest
- The chance to express their beliefs and wishes.
- The chance to make a shared decision with their health professionals on whether or not they should receive attempted CPR if they should suffer cardiac arrest.
The resulting ‘CPR decision’ would then be recorded either as a decision that attempted CPR would still be appropriate if they should suffer cardiac arrest or as a DNACPR decision.
When a person is dying from an advanced and irreversible condition, where CPR will not work and could cause harm, health professionals have to explain this. Such decisions are made to try to ensure that people receive the care that they need as they are dying. It also aims to make sure that people are not subjected to physical treatment that will deprive them of a dignified death.
However, there is every possibility that CPR could prolong a person’s life, that it could fail, or that it may cause harm. The likelihood of each of these possibilities will vary according to each person’s situation at the time. Each person will have their own view of whether they would or would not wish to have CPR in their individual circumstances. More information and forms should you decide to complete a DNACPR can be found here:
Power of Attorney
Power of attorney’s are legal documents that let you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf. This gives you more control over what happens to you if you have an accident or an illness and cannot make your own decisions. If you do not have one of these in place (or an advance directive/decision) then doctors will make decisions for you, in your ‘best interests’. Your family cannot make medical decisions for you unless appointed. If you do wan to appoint somebody, you can choose exactly what powers you want to grant. This can be for financial/property matters, or your personal health and welfare or both.
You do not have to use a solicitor, although if your circumstances are complicated, it is recommended that you do. If you choose to DIY you can follow these steps online or you can download the forms here. If you get stuck filling them out, you can call the Office of the Public Guardian on 0300 456 0300.
In Scotland, you can download the forms from the Office of the Public Guardian (Scotland). For help, call 01324 678 398.
If you become incapacitated and haven’t previously granted a Power of Attorney, it may be necessary for someone close to you to apply to court for an Intervention Order or Guardianship Order, so they can deal with your affairs on your behalf. Applying for a Guardianship Order or Intervention Order can be a lengthy process, so it is much better to grant a Power of Attorney in advance if you can.
Friends at the End offers advice and support on POA’s, so please get in touch if you need more information.
Services and Support
In Scotland anyone aged 65 or over is entitled to free personal care, if assessed as needing it. Free nursing care is available to anyone of any age assessed as requiring it.
Arrangements in England and Wales are different, personal care is means tested and currently local authorities won’t provide care services if you have more than £23,250 in savings and property. Advice on funding care in England and Wales is available from NHS Choices here.
Your local authority will try to establish whether you need care and if so (in Scotland) pay for help:
- to maintain your personal hygiene
- manage your continence
- assist with the preparation of food and fulfill any special dietary needs
to maintain mobility
- with counselling and support
- to ensure medication is properly managed, and
- personal assistance to get into and out of bed, to dress, and to use medical aids and prostheses
In addition, local authorities may arrange but may charge subject to a financial assessment for help with:
- attendance at Day Centres
- providing pre-prepared meals (support with preparing meals is free)
If you receive free personal care in your home, you are also entitled to attendance allowance to enable someone to take on caring responsibilities. Information on employing a personal assistant is available from the Money Advice Service here. Carers are also entitled to support.
If you need to modify your home in order to continue living independently, then your local authority will be able to provide advice and information on what support is available.
The Scottish Government has produced a booklet providing information on Free Personal and Nursing Care. It is available here. If you require help figuring out which support you are entitled to, get in touch and we will help research and signpost on your behalf.
Support towards the end of your life
You are entitled to a broad range of support, not just medical care, at the end of life.
NHS Choices provides information on what you can expect from end of life care here. But in our experience other support is not always as forthcoming as it should be. It’s important that you know what support you are entitled to, and that, once you are assessed re what care you need, there is a legal obligation on social services to meet your needs.
In addition to statutory care provide by the NHS and Local Authority Social Services there may also be a range of discretionary care provided by other bodies.
A Good Death
Friends at the End work to ensure that people have a good death within the current legal framework.
60,000 people die in Scotland every year, of these 70% are over the age of 70, one in three die of cancer, one in three will die from heart disease/organ failure and one in three of us will die with dementia and/or because we get old and frail.
A good death can, and should, mean different things to different people. To many it is one where the transition from life to death is seamless, painless and free from stress.
Achieving the death that you want can involve:
- being in an intensive care unit, getting various life-sustaining therapies,
- being at home, surrounded by family,
- being in a hospice receiving excellent palliative care
There are however some common threads which seem to be woven to the idea of a ‘Good Death’.
- Having affairs in order – funeral/memorial/burial/cremation plans, final medical care specified (Advanced Care Planning), having a proxy/power of attorney for health and finance appointed, financial commitments tied up, updated will so your estate is distributed the way you want it to be.
- Controlled pain/discomfort
- Cared for by chosen people – doctors, nurses, home carers or family/friends
- Being in a place of your choosing – home, care home, hospital, special place with happy memories
- Mindful/respectful care: to be treated as a live human being until the moment you die
- Not being alone
- Favourite activities or objects: the tangible and intangible things that would be most pleasing and comforting in your final days: favourite music or readings, photographs of happy/memorable occasions, a vase of flowers, a back rub or foot massage, being surrounded by loved ones in quiet conversation
Talking to Family and Friends
Talking with your loved ones before a medical crisis happens, gives everyone a shared understanding about what matters most to you at the end of life.
Conversations about your wishes can:
- bring families together by helping them understand what is important to you
- help your loved ones to communicate to your health professionals what is most important to you
- help you to figure out where you stand and what you want in terms of:
- the information you want about your condition and your treatment
- how much of a say you want to have in decisions about your treatment and how much you will leave it to your doctors
- whether you want to know how long the doctors think you have left to live
- what your worries about medical treatment are
- what your preferences are about where you would like to spend your last days
- how involved you want your loved ones to be in your care/treatment decisions
Conversations can also help your loved ones understand where you are coming from, particularly when they may disagree with you, its ok for them not to be in full agreement continuing to talk can help both you and them.
Yet having conversations about dying and end of life choices can be difficult, often family members may not be keen to engage saying things like ’you’ve got a long time left;’, or ‘you’ll outlive me’.
Here are some ways you could introduce the conversation:
- “I was thinking about what happened to…. , and it made me realize…”
- “Even though I’m okay right now, I’m worried that , and I want to be prepared.”
- “I need to think about the future. Will you help me?”
When having these conversations, it’s good to remember that a good death can mean different things to different people and that people can change their minds as circumstances change.
Talking to your Doctor
After you’ve had the conversation with your loved ones, the next step is talking to your doctor or other health professionals about your wishes. It’s better not to wait for a crisis before talking about this, talking while you’re well makes it easier to make medical decisions when the time comes.
Ask your Doctor to explain where things stand with your health today, and what the future may hold. Your Doctor can explain the available treatment options — and the chances of certain treatment options working.
Ask questions if anything is unclear. It’s important to remember that even for health professionals there is often a lot of uncertainty — both about the course of your illness, and about how different treatment options will work. Some questions you can ask include:
- “Can you tell me what I can expect from this illness? What is my life likely to look like 6 months from now, 1 year from now, and 5 years from now?”
- “What can I expect about my ability to function independently?”
- “What are some possible big changes in my health that my family and I should be prepared for?”
- “What can I expect to improve (or not improve) if I choose this course of treatment, or another course of treatment?”
- “Would you recommend this course of treatment if I want to live as long as possible or have as good a quality of life as is possible”
- “What can I expect if I decide to do nothing?”
You’re the expert about what matters most to you, so tell your Doctor what your preferences are and what you would like to happen, together you can decide which treatment options are right for you.
Even if you’re in good health, it’s still important to make sure your Doctor and family knows your wishes, as your health status can change suddenly.
Some of the treatment options your Doctor might mention:
Intubation/Mechanical Ventilation: When you can’t breathe on your own, a breathing tube is placed in your throat and into your lungs, connecting you to a machine that can breathe for you. Can be used short-term or long-term, depending on your needs and preferences.
Artificial Nutrition and Hydration: When you can’t eat or drink on your own, fluid and nutrients are delivered in an IV or through a tube in your nose or stomach. (This is some- times called a “PEG tube” — an abbreviation for “percutaneous endoscopic gastrostomy.”) Can be used short-term or long-term, depending on your needs and preferences.
CPR (Cardiopulmonary Resuscitation): If your heart stops, attempts are made to restart your heart with chest compressions or electricity.
Comfort Care: When curative care is no longer likely to help, medication or other non- invasive options are used solely to keep you comfortable.
Make sure to ask your doctor or other health professionals to document your discussion, and your wishes, in your medical record. Remember its ok to:
- Ask a lot of questions.
- Take time to decide
- Ask for numbers and statistics if it helps you, but also realize that in many cases, there is a lot of uncertainty.
- Have a private conversation with you doctor without loved ones being present
It’s important to have follow-up conversations to revisit these issues, as what you want may change as time passes and your health changes.
Along with the practical matters of having one’s affairs in order, it’s equally important to prepare for death emotionally, to spend time with loving people toward the end of life, and to have spiritual/religious sustenance.
Spirituality can help many people find strength and meaning during their final moments, think about your preferred spiritual or religious beliefs and underpinnings, and how you want these incorporated into your last days.
Saying goodbye to loved ones/pets can be difficult for both you and the recipients, the finality of it can be overwhelming, but many voice that once this is done, a presence of peace prevails.
Often quoted in the literature on death and dying are the tenets in “The Four Things That Matter Most”, by Ira Byock, a medical doctor who professes the need for a dying person to express four thoughts at the end of life:
- I love you.
- Thank you.
- I forgive you.
- Forgive me.
Your death is just that – yours- to plan and prepare for. You may relish in the sound of your grandchildren, the generation to come, running around your home filling it with laughter and light, or you may want peace and quiet, to say your final goodbyes and to be alone with one or two special people/animals. However it ends up, you have the best chance of achieving a good death when you plan and prepare for it
Nursing and personal care may be provided through a wide range of organisations in your area.
If you live in Scotland, further information on services in your area can be found through ALISS (A Local Information Service System for Scotland) here.
There is a wealth of support available, through a range of charities and organisations.
“To keep someone alive against their wishes is the ultimate indignity.”
– Stephen Hawking
Read more about the support we have provided to help affect change…