Planning Ahead for Future Care

You may think that planning ahead means giving up hope, predicting exactly how you will become unwell or allowing other people to take over your decisions. You may also assume that an advance statement, an advance decision to refuse treatment, a lasting power of attorney and a DNACPR record all perform the same function. They are different tools. None removes your right to make your own decisions while you have the mental capacity to do so.

Planning ahead is about living as well as possible Advance care planning is a voluntary process of considering what matters to you and how this may guide future care. It can be useful if you have a long term condition, increasing frailty, a serious illness or a condition that may affect communication or mental capacity. You can also plan while you are well. The discussion may include: What gives your life meaning. What abilities are especially important to you. What outcomes you would find difficult to accept. Who you trust to be involved. Where you would prefer to receive care. Which treatments you would or would not consider. Cultural, spiritual or religious priorities. Practical arrangements for people who depend on you What should happen during an emergency You do not have to complete every document or discuss every subject at once. Planning can happen gradually and should be reviewed as your views or health change. Planning does not mean treatment is stopping You can plan ahead while receiving treatment intended to control, improve or sometimes cure an illness. A plan may contain different approaches for different situations. You may want hospital treatment for a reversible infection but prefer not to receive invasive treatment if you are dying from an advanced condition. Planning does not require you to choose between "everything" and "nothing". It helps define which treatments may support your goals in particular circumstances. Your current decision comes first If you have mental capacity for a decision, you make that decision at the time it is needed. A previous advance statement, an attorney or a relative cannot override your current informed choice. You can agree to treatment, refuse treatment, ask for more information, change your mind, delay a non urgent decision, ask for communication support, or involve or exclude particular people. Mental capacity is assessed for the specific decision at the relevant time. A diagnosis, disability, communication need or previous period of confusion does not automatically mean that you cannot decide. An advance statement records what matters to you An advance statement describes your wishes, feelings, beliefs and preferences for future care. It may include: Where you would prefer to be cared for. Who you would like involved. Food, clothing or personal care preferences. Religious or spiritual practices. Communication requirements. Daily routines. What helps you feel safe. Important relationships. Your views about particular treatments. What quality of life means to you. An advance statement can be written or communicated in another reliable form. Writing it down, dating it and sharing it usually makes it easier to use. An advance statement is not legally binding in the same way as a valid advance decision to refuse treatment. However, it should be considered when professionals make a best interests decision for you. An advance statement cannot guarantee a particular treatment You can record that you would prefer a particular treatment. However, you cannot require a clinician to provide treatment that is unavailable, clinically inappropriate or unlikely to work. Your preferences should still be discussed and considered. Clinicians should explain the available alternatives and the reasons for any recommendation. A preference about place of care is also not an absolute guarantee. Clinical needs, safety, staffing, housing and local services may affect what is possible. An advance decision can refuse specified treatment An advance decision to refuse treatment is often shortened to ADRT. It is sometimes called a living will. It allows you to refuse a named medical treatment for a future time when you lack the capacity to decide about that treatment. You must identify the treatment you are refusing, the circumstances in which the refusal applies, and any conditions or exceptions. A broad statement such as "I do not want heroic treatment" may be too unclear to determine which treatment you mean. An ADRT can refuse treatment. It cannot demand treatment or require someone to take action intended to cause death. A valid and applicable ADRT can be legally binding In England and Wales, healthcare professionals must follow an ADRT when it is both valid and applicable to the exact circumstances. An ADRT is generally valid only if you were aged 18 or over when you made it, you had mental capacity for the decision, you made it voluntarily. You have not withdrawn it, you have not later acted in a way clearly inconsistent with it, and a later legal arrangement has not replaced its effect. It is applicable only if the treatment and circumstances match what you described. If there is uncertainty, clinicians may need to review the wording, dates, medical circumstances and other legal documents. Urgent treatment may sometimes be provided while genuine uncertainty is resolved, provided this is legally and clinically justified. The Mental Capacity Act gives a valid and applicable ADRT the same force as a current refusal made by a person with capacity. Refusing life sustaining treatment requires extra formalities If your ADRT refuses treatment that may be needed to sustain your life, it must be in writing, be signed by you, be witnessed, and state clearly that the refusal applies even if your life is at risk. Life sustaining treatment could include CPR, ventilation, dialysis or clinically assisted nutrition and hydration, depending on the circumstances. The wording must be specific enough for clinicians to know whether the ADRT applies. Professional advice can help prevent ambiguity. You can change or withdraw your ADRT While you have capacity, you can change your mind. A refusal of non life sustaining treatment may sometimes be withdrawn verbally. However, written confirmation reduces later uncertainty. If you change an ADRT: tell your GP and relevant clinical teams, replace stored copies, tell your attorney and people close to you. Mark old versions as withdrawn, record the date of the change, and check that electronic and paper records are updated. Do not leave several contradictory versions without clarification. A lasting power of attorney appoints a decision maker In England and Wales, a lasting power of attorney is a legal document through which you appoint one or more trusted people as attorneys. There are two types: health and welfare, and property and financial affairs. A health and welfare LPA can cover decisions about medical care, daily routines and living arrangements. You must make the LPA while you have mental capacity and register it with the Office of the Public Guardian. Different legal arrangements apply in Scotland and Northern Ireland. A health and welfare attorney acts only when you cannot decide A health and welfare attorney cannot take over simply because you are ill, you are in hospital, they disagree with you, a decision is complicated, or you ask them for informal support. They can make a particular decision only when you lack capacity for that decision. Before that point, they may support you, attend discussions with your permission and help professionals understand your wishes. You remain the decision maker. A health and welfare attorney can make decisions about life sustaining treatment only if the LPA document expressly gives them that authority. The attorney must act in your best interests, considering your past and present wishes, values and beliefs, relevant written statements, the views of people important to you, available clinical information, and less restrictive options. An attorney cannot demand a treatment that the clinical team considers inappropriate or ineffective. An ADRT and an LPA can interact The order in which documents were made can matter. In England and Wales, a valid and applicable ADRT may prevent an attorney from consenting to the treatment you refused. If you later make an LPA and expressly authorise the attorney to decide about that same treatment, the later LPA may replace the effect of the earlier ADRT. An attorney's authority depends on the wording of the registered LPA. Because conflicts can have serious consequences, ask a clinician or suitably qualified legal adviser to review both documents together. Ensure that your intentions are consistent and clearly dated. "Next of kin" does not automatically mean legal authority A partner, spouse, adult child or other relative does not automatically gain the legal power to consent to or refuse treatment for you. People close to you should usually be consulted about your wishes when you lack capacity. Their knowledge can be very important. However, they become the legal decision maker only if they hold the relevant authority, such as a registered health and welfare LPA or an appropriate court appointment. Naming someone as your emergency contact or next of kin does not create an LPA. DNACPR applies only to CPR DNACPR means do not attempt cardiopulmonary resuscitation. It records that CPR should not be attempted if your heart or breathing stops. It does not mean do not treat, do not admit to hospital, stop all medicines, withhold food or drink, stop pain relief, ignore infection, provide less nursing care, or assume you are currently dying. You should continue to receive all other appropriate care, treatment and support. You can refuse CPR If you have capacity, you can refuse CPR. You can discuss this with your clinical team and ask for the decision to be recorded. If you want the future refusal to be legally binding when you lack capacity, you should make a valid ADRT covering CPR and the circumstances in which the refusal applies. You can change your mind while you have capacity. Tell the clinical team promptly so that the record can be reviewed. A clinician may decide that CPR should not be attempted CPR is a medical treatment. A clinician is not required to offer it when it would not work or would provide no overall clinical benefit. You should normally be informed of the decision, given an explanation, asked about your wishes and priorities, and given an opportunity to ask questions. A clinician does not need your consent to record that clinically inappropriate CPR should not be attempted. However, the decision must be made individually and must not be based on age, disability, dementia, autism, diagnosis or place of residence alone. You can request review or another clinical opinion if you disagree. You cannot require clinicians to provide CPR that they judge will not work. A DNACPR form communicates a clinical decision or recommendation about CPR. The form itself is generally not a legally binding refusal. An ADRT may be legally binding if it validly and specifically refuses CPR in the relevant circumstances. The two records can support each other, but they are not interchangeable. Emergency care plans consider more than CPR A treatment escalation plan or ReSPECT type plan may record recommendations for a future emergency. It may describe treatments that should be considered, treatments unlikely to help, whether hospital transfer may be appropriate, your priorities, your preferred place of care, the CPR recommendation, and who should be contacted. These plans support rapid decision making. They do not replace your current consent, a valid ADRT or the authority of a health and welfare attorney. Recommendations may need to change when your health or circumstances change. Best interests decisions remain individual If you lack capacity and no valid ADRT or authorised attorney decides the matter, clinicians may make a best interests decision. Best interests do not mean whatever is easiest for a service. The process should consider your previously expressed wishes, your current responses and feelings, your beliefs and values, clinical benefits and burdens. Less restrictive options, information from people who know you, whether capacity may return, and whether the decision can safely wait. A family member may contribute essential information even when they are not the legal decision maker. Make the information easy to find A plan cannot guide care if nobody knows it exists. Consider giving a copy to your GP, asking for it to be added to relevant clinical records, telling your attorney where the original is stored, sharing it with close family or carers where appropriate. Taking a copy to hospital, keeping emergency forms in the locally recommended place, recording safe contact details, and checking how information is shared with out of hours services. Do not store the only copy somewhere inaccessible during an emergency. Review the plan after significant changes Review your planning documents when your diagnosis changes, your health improves or deteriorates, a new treatment becomes available, you move home or change GP, a named attorney dies or can no longer act. Your relationships or priorities change, you have a major hospital admission, you change your view about CPR or life sustaining treatment, or different documents appear inconsistent. A review does not require you to change anything. It confirms whether the plan still reflects your wishes. Legal frameworks differ across the UK The Mental Capacity Act 2005 and LPA arrangements described above apply to England and Wales. Scotland and Northern Ireland have different terminology, legislation and documentation. CPR forms and emergency care plans may also vary between local services. This lesson provides general education. It does not replace individual clinical advice, legal advice or local advance care planning procedures.

Planning ahead creates a set of safeguards around your future voice. A useful plan connects what matters to you, which treatments you would refuse in specified circumstances, who should be involved if you cannot decide, and clinical recommendations for an emergency. Your current informed decision remains central whenever you can make it.