Advance Care Planning (ACP)

1. Advance Care Planning(ACP) Deborah Holman End of Life Care Specialist Nurse Gold Standards Framework Facilitator

2. ‘Our lives begin to end the day we become silent about things that matter.’ -- Martin Luther King, Jr.

3. What is ACP? • ACP is a process that aims to initiate conversations between individuals and their care providers. • Usually in the context of an anticipated deterioration in the individual’s condition in the future. • According to personal preference an individual may or may not involve family and friends. • It is a tool for individuals to register their views and maintain their autonomy given that most elderly people have already given some thought to the end of their life. • It has the advantage of enabling individuals to influence their provision of care and shape the end of their lives according to their personal preferences and choices.

4. The key underpinning principals in this process include: • The process is voluntary and therefore no one is obligated to take part in this process. • Confidentiality must be respected. • The process is a reflection of society’s desire to value individual’s autonomy. • All health and social care workers should be open to any discussions that may be instigated by an individual and acquire the appropriate training to communicate effectively and understand the legal and ethical issues involved. • Each person must be aware of their own limitations and understanding.

5. Discussion should focus on the views of a competent individual even if family or carers are invited to participate. The discussion should only be instigated if it is in the best interests of the individual. • The individual must have the capacity to understand, discuss options and agree to whatever is planned. Individuals must be able to make informed decisions. • Agreement must be documented as must refusals to treatment. • Documented information should be made available to out of hours service providers to enable continuity.

6. Mental Capacity Act April 2007 • To have “mental capacity” means that a person is able to make decisions for themselves. The legal definition says that someone who lacks capacity cannot do one or more of the following four things: • Understand information given to them. • Retain that information long enough to be able to make a decision. • Weigh up the information available to make a decision. • Communicate their decision. This could be by any possible means, such as talking, using sign language or even simple muscle movements such as blinking an eye or squeezing a hand.

7. The mental capacity act has five main principles: • Assume a person has capacity unless proven otherwise • Do not treat a person as incapable of making a decision unless every attempt to help them has been made • Do not treat a person as incapable of making a decision because their decision may seem unwise • When making decisions for people without capacity always do so in their best interest • Before doing something to someone or making a decision on their behalf, consider whether you could achieve the outcome in a less restrictive way

8. Advance decisions and statements;previously known as living wills. • Living will is a legal document that spells out the types of medical treatments and life-sustaining measures you do and don't want. Living wills became a “catch all” for general statements about persons wishes, preferences and specific refusals of treatment. Not generally a term used by professionals now. • An Advance Decision allows you to record your wish to refuse certain types of medical treatment‚ and will be binding on the people providing your care if you lose the capacity to make the decision at the relevant time. • An Advanced Statement allows you to record your personal wishes, preferences and views. It can relate to any part of your life and include your values and beliefs. It must be taken into account when making “best interest” decisions but is not legally binding.

9. It is still possible to make a advance decision if a person is diagnosed with a mental illness, as long as they can show that they understand the implications of what they are doing.They need to be competent to make the decision in question, not necessarily to make other decisions. Therefore it is preferable for such a person to put their wishes in writing and explain: • why they have made their decision about how they do/don't want to be treated • what they understand about the treatment they are agreeing to or refusing • why they are making these decisions now

10. Limitations on advance decisions • A person cannot use an advance decision to: • ask for their life to be ended • force doctors to act against their professional judgment

11. Lasting Power of Attorney (LPA) You can create two types of LPA: • Property and Affairs LPAA Property and Affairs LPA allows you to choose someone to make decisions about how to spend your money and the way your property and affairs are managed. • Personal Welfare LPAA Personal Welfare LPA allows you to choose someone to make decisions about your healthcare and welfare. This includes decisions to refuse or consent to treatment on your behalf and deciding where you live. These decisions can only be taken on your behalf when the LPA is registered and you lack the capacity to make the decisions yourself. • LPA only be usedafter it is registered with the Office of Public Guardian.

12. The role of ACP in Gold Standard Framework (GSF). • Improving the pre-planning of care has been found to be one of the most important ways that we can ensure reliable patient-focused care. • GSF incorporates this ‘thinking ahead’ approach as part of the process of best care.

13. The DNR question (Do Not Resuscitate) • Resuscitation is a medical procedure which seeks to restore cardiac and/or respiratory function to individuals who have sustained a cardiac and/or respiratory arrest. • The medical establishment supports the use of DNR orders on the basis either that these have been requested by the patient, or because the patient’s state of health is so poor that resuscitation would be futile. • However DNR should not be interpreted to mean ‘do not treat’.

14. Legally it is important to consider the following: • Resuscitation is to be considered a treatment like any other. • If a person is incompetent to discuss the issue the doctor must make a ‘best interest’ decision based on his and other family/carer knowledge of the person’s previous wishes. • A doctor is not obliged to provide futile treatment even if a person requests it. • A competent adult can refuse resuscitation. • No one can give or withhold consent for resuscitation on behalf of an incompetent adult. In particular family members can neither refuse nor demand such treatment. However, good medical practice dictates that a family should be involved in these discussions to maintain confidence and clarify, if necessary the persons likely wishes in the light of previous family discussion.

15. Palliative care complaintsIn a significant amount of cases our advisors found that poor communication limited a patient’s sense of empowerment and their ability to make an informed decision about their careHealth Care Commission Spot light on complaints 2008

16. Research • Very little in the UK, mostly USA, Canada, Australia. • Views on elderly people on living wills: interview study. Schiff et al 2000 • Study of 74 people revealed that most elderly people have clear views on issues raised in living wills and 92% did not want their lives prolonged by medical intervention. • Planning for the end of life: the views of older people about advance care statements. Seymour et al 2003 • Study of 32 people revealed that such a document could help families and that they should be involved. Emphasis was made that a trusting relationship between participant and doctor was needed. However it was evident that ACP was better as a process rather than a “once and for all” decision.

17. ACP in care homes for older people: a survey of practice. Froggatt et al 2008 • This study showed that whilst many people were in favour of ACP and thought it was important the evidence that it happened was limited. • It also recommended that ACP be used on a wider scale i.e. primary care, public health.

18. Dilemmas • The process of ACP is highlighted as one of the most difficult areas for health care professionals. • Why? ……when patients have a moral right to information that concerns them, and doctors have no right to withhold such information? • We can rationalize why we shouldn't do it on the basis that withholding information is justified on the ethical grounds of beneficence. • There is evidence to prove that when patients were asked, most of them wanted full disclosure and most were dissatisfied when they didn’t get it. • Will the unrealistic expectations of patients or families influence our decision making? • Whose responsibility is it to discuss end of life decisions anyway? • How open and honest should we be? Does it really matter? • Does it challenge our own mortality? • Difficult conversations need to be had – we need to have the courage to have them.

19. They may forget what you said, but they will never forget how you made them feel. - Carl W. Buechner

20. Why is communication in EoLC different? • The subject can be taboo and not normally talked about • Emotions can run high and be unfamiliar and powerful • There are lots of players involved • The speed of events can make communication overwhelming • The finality of the subject matter • What is communicated is “bad” • The role can be unfamiliar to the nurse/carer • There needs to be a number of health care professionals involved • Partnership and permission needs to be created bringing trust into the relationship

21. The most important thing about communication is to hear what isn’t being said. Peter F. Drucker

22. Blocks to communication Behaviours/attitudes we should avoid include: • Changing the subject - this blocks communication • Giving meaningless reassurance - this is not goal directed • Giving stereotypical replies - this confuses communication • Giving advice when not asked for - this is often not beneficial • Talking about yourself - this is irrelevant • Showing disapproval - this blocks communication • Passing judgement - this makes meaningful communication impossible • Speaking and acting inconsistently - this confuses communication • Asking closed questions - this blocks communication

23. "Remember that silence is sometimes the best answer."  - Dalai Lama

24. “How people die remains in the memory of those who live on” Dame Cicely Saunders