Advance care planning

1. Advance care planning Elena Baker-Glenn ST7 in adult/ old age psychiatry 11th July 2016

2. What is advance care planning? • Advance care planning involves discussion of future care preferences to develop an understanding of an individual‘s wishes in the event that they are unable to make decisions for themselves (National Council for Palliative Care 2007)

3. Why is advance care planning important? Healthcare professionals and care providers Individuals Families

4. Why is it important in dementia? • People with dementia may lose capacity to make decisions • People with dementia may struggle to communicate their decisions • Barriers include taboos over discussing death and poor understanding of dementia as terminal illness

5. Case A “… I feel devastated with what happened in the last two days of my husband’s life. It was not at all what he had wanted or planned for. Ages ago, it must have been at least six months, we had sat down and discussed his wishes. We knew there would come a time when he would not be able to say what he wanted. It was really hard. We discussed some hard bits that we had never spoken about before or since. We had told our nurse and doctor, and they told us that everything was arranged. He did not want his life prolonged. When he was no longer able to speak, he just wanted to die as peacefully and quickly as possible at home and with his family. He certainly did not want lots of tests, be in hospital and die on his own. We had picked the music we would listen to together... He was breathless and I called for help. I wish I hadn’t made that call, When the ambulance came, I tried to say that he wouldn’t want this and that I’d spoken to the doctors and nurses. We just needed some help. They said that unless this plan was written down, they had to do what they thought was best. I feel so guilty that I’ve let him down, that it was my fault for making the phone call...”

6. Case B • John, 84, is a resident at a Care Home. He has been widowed for ten years and has a son who emigrated to New Zealand five years ago. John is frail and suffers from dementia. His frailty has been increasing for the last few months and he needs more support from carers for all of his daily activities. John is capable of deciding on choices of food and drink, but gets confused if moved from a familiar environment. • The carers at the home know that John would prefer to stay at the care home if he became unwell. However, when he becomes unwell with a severe chest infection, they contact the out of hours GP service. The GP visited and did not know John and did not know his preferences. He refers John to the local hospital for intravenous antibiotics to treat the infection. • John is taken by ambulance to the local Emergency Department where he is examined and an intravenous infusion is commenced. His condition deteriorates and he is taken to the Medical Assessment Unit where he dies. • The care home staff feel as if they have failed John in his final hours. They would have preferred to care for him in the home and allow him to die in familiar surroundings with people who knew him. Unfortunately they were unable to convince the GP to do this.

7. Where do people die? • Around 500,000 people die in England each year • 30% of those over the age of 60 will die with dementia (Brayneet al 2006) • 70% prefer to die at home (Gomes et al 2012) • BUT in dementia: • Only just over 20% achieve home death • 20% die in Residential Care • 56% die in hospital • More than 50% have between 2 and 5 admissions in their last year of life

8. Where do people die? • People with dementia are: • more likely to die in the acute hospital • less likely to receive hospice or palliative care • less likely to have their spiritual needs considered when they die (Sampson et al 2006) • 54% of complaints in acute hospitals relate to care of the dying/ bereavement care (Healthcare Commission 2007)

9. Mental Capacity Act • Section 4 Best Interests • The person making the determination must consider all the relevant circumstances... • Section 4.6 He must consider, so far as is reasonably ascertainable – • The person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity) • The beliefs and values that would be likely to influence his decision if he had capacity, and • The other factors that he would be likely to consider if he were able to do so

10. Advance Care Planning • Advance Statement (AS) • Advance Decisions to Refuse Treatment (ADRT) • Lasting Power of Attorney (LPA) • Financial decisions (property and affairs) • Health and care decisions (health and welfare)

11. Advance statement • Statements about future needs and wishes • Can cover a wide range of areas: care, support, treatment • Not legally binding • Does not need to be written down • Wants and preferences • Helpful for best interests decisions

12. Examples of advance statements • How you want any religious or spiritual beliefs you hold to be reflected in your care • Where you would like to be cared for – for example, at home or in a hospital, a nursing home, or a hospice • How you like to do things – for example, if you prefer a shower instead of a bath, or like to sleep with the light on • Concerns about practical issues – for example, who will look after your dog if you become ill

13. Advance Care Planning • Advance Statement (AS) • Advance Decision to Refuse Treatment (ADRT) • Lasting Power of Attorney (LPA) • Financial decisions (property and affairs) • Health and care decisions (health and welfare)

14. Advance decision • Section 24 and 25 MCA 2005 • For refusals of treatment • Made when over 18 years of age • Must be fully aware of consequences of treatment refusal • Legally binding • Must be VALID and APPLICABLE • Must be clear and unambiguous • No undue influence of others • If related to life saving treatment must be in writing • Can be amended as many times as necessary (if capacitous)

15. Advance decision • It cannot: • Refuse treatment when person has capacity • Refuse basic care • Refuse offer of food or drink by mouth • Refuse measures to maintain comfort e.g. painkillers • Demand specific treatment • Refuse treatment for a mental disorder whilst detained under the Mental Health Act 1983

16. Exercise

17. Are these valid advance decisions? • Mrs A says that she has a general wish not to be treated if she develops dementia in the future • Mr B says that he wishes to refuse a specific treatment whether or not he lacks capacity. He wants it all written down now to save him the bother of doctors asking him his wishes in the future • Mrs C says that if she loses capacity, she wants to refuse all treatment, including being fed and washed • Mr D has Alzheimer’s dementia. If it progresses so that he loses capacity, he would wish to refuse antibiotics if he developed a chest infection, but receive antibiotics if he developed a urinary tract infection • Mrs E wishes to develop an ADRT but does not wish for either her family to know of its existence or for a copy to be kept in her medical records

18. Consider this case: An NHS v D • Signed letter stating: “I refuse any medical treatment of an invasive nature (including but not restrictive to placing a feeding tube in my stomach) if said procedure is only for the purpose of extending a reduced quality of life. By reduced quality of life, I mean one where my life would be one of a significantly reduced quality, with little or no hope of any meaningful recovery, where I would be in a nursing home/ care home with little or no independence. Similarly, I would not want to be resuscitated if only to lead to a significantly reduced quality of life”

19. Guidance – “gold standard” • Put all decisions in writing • Include name, date of birth, address and GP details • Details of treatment refused and the circumstances refusal will occur in • Sign and date the document • Witness signature • Doctor or other professional to sign statement to declare person had capacity at the time decision was made

20. Guidance – “gold standard” • Advance decision to refuse life-sustaining treatment: • Mustbe in writing • Document must be signed and dated • The patient’s signature, or the signature of the person signing on their behalf, must be witnessed • The witness must also sign the document • There must be a written statement that the advance decision is to apply to the specific treatment ‘even if life is at risk as a result’

21. Advance decision • Section 25(2) MCA – ADRT not valid if P • Has withdrawn the decision at the time when he had capacity to do so • Has, under a lasting power of attorney created after the advance decision was made, conferred authority on the done (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or • Has done anything else clearly inconsistent with the advance decision remaining his fixed decision

22. Advance Care Planning • Advance Statements (AS) • Advance Decisions to Refuse Treatment (ADRT) • Lasting Power of Attorney (LPA) • Financial decisions (property and affairs) • Health and care decisions (health and welfare)

23. Lasting Power of Attorney

24. Lasting Power of Attorney • Separate form for each type • Signed form (witnessed) to be sent to the Office of the Public Guardian • Someone signs to state you have capacity (professional/ someone you have known for 2 years, but is independent) • Named person – safeguard • Pay a fee - £110

25. Lasting Power of Attorney: Property and Affairs • Good idea to do this in early stages of dementia • Much easier and less expensive than Court of Protection process • Can make LPA after losing capacity for some financial decisions • LPA registered with Office of the Public Guardian • Can be used even if the donor still has capacity with their permission

26. Lasting Power of Attorney: Health and Welfare • Includes decisions about medical treatment and place of care • Only comes into effect when the person has lost capacity to make these decisions • Attorney must make decisions in the person’s best interests

27. Overlap • Lasting power of attorney vs advance decision • If LPA then advance decision – advance decision takes priority • If advance decision then LPA – attorney may be able to override advance decision

28. How to discuss advance care planning - PREPARED • Prepare for the discussion • Relate to the person • Elicit patient and carer preferences • Provide information • Acknowledge emotions and concerns • Realistic hope • Encourage questions • Documentation

29. Suggestions to consider • What to expect as illness progresses • The pros and cons of treatment options • Any treatment not wanted • Life expectancy • Preferred place of death • The different methods of pain relief available • The practical and emotional support available • The physical and emotional changes that may be experienced

30. Summary • Advance Care Planning important in patients with dementia diagnoses • Discuss early on with them and their family • Fits within MCA framework • Advance Statements (AS) • Advance Decisions to Refuse Treatment (ADRT) • Lasting Power of Attorney (LPA) • Financial • Health and care

32. Resources • Office of the Public Guardian website • SCIE website • Alzheimer’s Society website • Age UK • GMC: Treatment and care towards the end of life: good practice in decision making

33. Questions?