2. Find out more online: www.worcestershire.nhs.uk Advance care planning Dr Claire Curtis Consultant in Palliative Medicine Oct 2011

3. Find out more online: www.worcestershire.nhs.uk Content ● Advance care planning ●What, when, who, how? ●Advance statement ●Advance decision to refuse treatment ●Documentation ● Resuscitation ●Facts ●Discussion ●Documentation

4. Find out more online: www.worcestershire.nhs.uk What is advance care planning? ● Advance care planning (ACP) is a: ●voluntary process of discussion and review ●to help an individual who has capacity to anticipate how their condition may affect them in the future ●and, if they wish, set on record: choices about their care and treatment and / or an advance decision to refuse a treatment in specific circumstances, ●so that these can be referred to by those responsible for their care or treatment...... in the event that they lose capacity to decide once their illness progresses (Capacity, care planning and advance care planning in life limiting illness: A guide for Health and Social Care Staff. NHS EOL Care Programme & NCPC. 2011)

5. Find out more online: www.worcestershire.nhs.uk What ACP is not ● Not valid while a person retains capacity ● Not “advanced” care planning – not a special level/only done by people with advanced skills ● Not essential such that every patient should be forced to have one

6. Find out more online: www.worcestershire.nhs.uk How can ACP help? Provides information about a person’s priorities which can be considered at a future time when acting in a person’s best interests ● Identifies issues which may need to be dealt with sooner rather than later ● Can make professionals aware of a person’s wishes and the need for review as circumstances change ● Can promote important discussions between family members ● Can provide an opportunity to discuss appointing Lasting Power of Attorney or making an advance decision to refuse treatment

7. Find out more online: www.worcestershire.nhs.uk When to start ACP? Any time. Trigger event could be: ● The death of a spouse or close friend ● A new diagnosis of a life limiting disease ● A change in progress of an existing illness ● New treatment options to consider ● A need to consider a different care setting ● A change in personal circumstances eg retirement ● Changes within the family dynamics

8. Questions to ask before initiating ACP discussions http:/portal.e-lfh.org.uk Questions to ask before initiating ACP discussions

9. Find out more online: www.worcestershire.nhs.uk Who should do ACP? Professionals engaging in ACP should have the ability to: ● Anticipate situations where deterioration in mental capacity is highly likely ● Introduce ACP conversations at an appropriate stage in the illness journey ● Assess capacity to engage in ACP discussion ● Facilitate family involvement in ACP, whilst protecting the patient from undue influence ● Recognise when ACP is not appropriate

10. Initiating ACP discussion http://portal.e-lfh.org.uk “It would be good to discuss what kind of medical care you would want if you should get sick again. How do you feel about talking about this?” What do you see happening with your illness over the next few months? I wouldn’t be providing you with the best care if I didn’t find out about your future wishes should you get to the point at which you can’t express them for yourself Sometimes people in your situation have felt it is important to let the staff who care for them know their wishes and preferences…... about….. Have you had any such thoughts? It is important that you think about any preferences that you may have about your future care, so we can discuss these and perhaps help you make decisions.

11. Find out more online: www.worcestershire.nhs.uk ACP discussion ● Be prepared to discuss some facts ●Some people may wish to discuss CPR or artificial hydration ●Some may just wish to discuss comfort measures or hospice facilities ● A successful ACP conversation needs to be structured ● It should convey the information that the person needs and elicit relevant preferences and goals related to health and illness

12. Find out more online: www.worcestershire.nhs.uk When might it be wrong to initiate an ACP discussion? ● When the patient is symptomatic. ●They will be unable to focus and may feel the future is more short term ● If the patient is angry or upset. ● They may lack concentration and the ability to think about the future ● If the patient has not been informed of their situation or if they lack information ● If the patient and/or their family are in denial ● The patient is simply not ready to think about, or plan for, the future

13. Find out more online: www.worcestershire.nhs.uk Sometimes patients are reluctant to have ACP discussions I can see that this discussion is difficult for you. If you would like we can stop for a short while, or of you would prefer, we can continue on another day?

14. Find out more online: www.worcestershire.nhs.uk What does ACP involve? ● Advance statement ● ADRT ● Appointment of LPA

15. Find out more online: www.worcestershire.nhs.uk Advance statement ● Written statements ● Made by a person before losing capacity ● About things they wish to be considered in the case of future loss of capacity due to illness

16. Find out more online: www.worcestershire.nhs.uk Advance statement ● Can include an individual’s preferences, wishes, beliefs, values ● Might cover medical and/or non-medical treatment ● Might mention who to consult if a decision has to be made (but they cannot make the decision) ● Used to guide future best interests decisions in the event an individual has lost capacity ● Makes MDT aware of the patient’s wishes ● Not legally binding

17. Find out more online: www.worcestershire.nhs.uk Lasting Power of Attorney ● Statutory form of power of attorney created by the Mental Capacity Act (2005) ● Anyone who has capacity to do so may choose a person to make decisions on their behalf if they subsequently lose capacity. ● These decisions can be all or any of the following related to the patient: ●Personal welfare ●Property and affairs ● Need to direct patient to discuss with a solicitor

18. Find out more online: www.worcestershire.nhs.uk Advance Decision to Refuse Treatment (ADRT) ● Legally binding document ● Cannot be made if lack of capacity ● Can only cover refusal of a specified future treatment in the event that an individual has lost capacity to make that decision ● If specified to only apply in certain circumstances, all these circumstances must be present for the ADRT to be binding ● For refusal of life sustaining treatment, must be written, signed and witnessed and contain a statement that it applies even if the person’s life is at risk

19. Find out more online: www.worcestershire.nhs.uk Developing an ADRT Discussions should take place over time and should not usually be completed on a single visit ● Use words that the patient understands ● Avoid ambiguous terms ● The patient needs enough information regarding treatment options and when an ADRT would come into action ● The patient needs to understand the consequences of their decision ● The patient’s consent must be obtained prior to writing the ADRT in the notes or sharing the ADRT with other health and social care professionals ● Should be shared with anyone who needs to know

20. Find out more online: www.worcestershire.nhs.uk Developing an ADRT ● Can be done by anyone as long as they are 18 or over and have capacity for the decision they are making ● Can be made at any time (maybe before someone even becomes unwell) ● Advise individual to discuss their decision with their partner, family, carers, health or social care professionals ● Decisions should be reviewed because circumstances can change ● Patients should feel under no obligation to develop an ADRT

21. Find out more online: www.worcestershire.nhs.uk Assessing capacity ● An ADRT can only be made by someone who has capacity. ● A reminder…………….. ●The Mental Capacity Act is underpinned by five key principles: ●An assumption of capacity ●All practical steps must be taken to support people to make their own decisions ●People have the right to make unwise or eccentric decisions ●Any decision made on behalf of a person who lacks capacity must be in their best interests ●Rights and freedoms must be restricted as little as possible

22. Find out more online: www.worcestershire.nhs.uk Assessing mental capacity ● Mental capacity is defined as ‘the ability to make a decision’. There is a two stage test to help you assess capacity: ●Is there an impairment, or disturbance, in the functioning of the person’s mind or brain? ●If so, is the impairment or disturbance sufficient to cause the person to be unable to make that particular decision at the relevant time?

23. Find out more online: www.worcestershire.nhs.uk Stage one test ● Is the person suffering from a disorder or impairment of the mind or brain? ● If “yes” then stage two follows. ● It is important to document evidence for stating the person has an impairment or disorder. ● Remember stage one of the test only means that stage two is necessary to rebut the presumption of capacity.

24. Find out more online: www.worcestershire.nhs.uk Stage two test Is the person able to understand and retain the information required to make the decision required? ● Can the person use and weigh up the information to reach a decision? ● Can the person communicate their decision? ● Stage two is decision specific. The professional has a duty to facilitate this process by: ●Ensuring enough time is available ●Providing straightforward information ●Facilitating communication

25. Find out more online: www.worcestershire.nhs.uk Documentation of ACP ● Many different versions of documentation available ● The main areas to document reflect the ACP discussion: ●Individual important values or personal goals for care ●The patient’s understanding about his/her illness and prognosis ●Specific preferences for types of care or treatment ●May include an ADRT

26. Find out more online: www.worcestershire.nhs.uk Documentation of ACP ● The document should also include: ●The patient’s personal details ●Details of the health and social care professionals involved in ACP discussions ●Details of family members involved in ACP discussions ●A review date

27. Find out more online: www.worcestershire.nhs.uk Documentation of ACP ● Worcestershire health services project group to be set up to develop a Worcestershire wide ACP document. ● Until then – can hand-write own version ● Can download an example ADRT document from: ●www.endoflifecareforadults.nhs.uk/publications/adrtformwww.endoflifecareforadults.nhs.uk/publications/adrtform ● Further guidance available from ●www. http://www.endoflifecareforadults.nhs.uk/publications/pubacpguide

28. http://portal.e-lfh.org.uk

29. Paramedics views http://portal.e-lfh.org.uk Paramedics views

30. Find out more online: www.worcestershire.nhs.uk Who needs a copy of an ACP document? This list might include: ● The patient ● Close family ● Friends ● GP ● District nurse NB – Need to have patients consent ● Social worker ● Ambulance services ● OOH GP and DN service ● Drs and nurses (via hospital notes) ● Palliative Care Team

31. Find out more online: www.worcestershire.nhs.uk Why review an ACP document? ● An ACP document needs to reflect the patient’s current intentions ● Health professionals need to be certain that the document is current if they are to act on it ● The patient may have changing or new life events that affect their ACP decisions ● Having a review makes it possible to record any required changes ● Reviewing the ACP document strengthens the ACP process as a whole, and the professional-patient relationship

32. Find out more online: www.worcestershire.nhs.uk Resuscitation http://portal.e-lfh.org.uk

33. Find out more online: www.worcestershire.nhs.uk Resuscitation facts ● On some drama series the success rate for re-establishing breathing and circulation is approximately 75%! ● In reality only 15% of all people on whom resuscitation is attempted recover sufficiently to leave hospital ● The chance of survival in patients who spend more than half their time in bed before the arrest is less than 4% ● Less than 2% of patients with cancer are successfully resuscitated when their condition is deteriorating and the arrest is due to a pre- existing condition unresponsive to treatment

34. Find out more online: www.worcestershire.nhs.uk Adverse effects of CPR ● Rib or sternal fractures, ● Hepatic or splenic rupture ● Most patients require at least a brief period of observation and treatment in an ICU or CCU ● Some require prolonged treatment ●Including ventilation, dialysis, circulatory support ● Brain damage and resulting disability ● Attempts may be traumatic ●death occurs in a manner that the patient and people close to the patient would not have wished.

35. Find out more online: www.worcestershire.nhs.uk DNAR ● CPR should not be attempted when: ●It is unlikely to start a patient’s heart and breathing ●Restarting the heart and breathing would provide no worthwhile or sustainable benefit ●It is not in accord with the sustained wishes of the patient with capacity for that decision, or that of a properly appointed Lasting Power of Attorney (LPA) ●There is a valid and applicable ADRT to refuse it ●A previous Do Not Attempt Resuscitation (DNAR) order is valid and applicable.

36. Find out more online: www.worcestershire.nhs.uk Capacity and DNAR ● If a patient does not have capacity (and there is no ADRT and no LPA) the decision is the legal responsibility of the consultant or GP who must act in the patient’s best interest. ● The GMC has stated that ‘there is no obligation to give treatment that is futile or burdensome’. This includes CPR ● Those close to the patient should be involved in discussions to explore the patient’s wishes, feelings, beliefs and values.

37. Discussing resuscitation Umm…if anything were to happen, would you want everything done? It’s really important that at this stage in your illness we concentrate on trying to keep you comfortable. Something that would no longer be of benefit to you is us attempting to restart you heart and lungs if they were to stop. This could cause you and your family added distress Discussing resuscitation

38. Find out more online: www.worcestershire.nhs.uk DNAR form ● Responsibility for making a DNAR decision rests with the most senior registered Health Care Professional currently in charge of the patients care ● No fixed review date, but should be reviewed if changes in patient’s condition, treatment or wishes ● A DNAR decision does not override clinical judgement in the unlikely event of a reversible cause of the arrest that does not match the circumstances envisaged (eg choking)

39. Find out more online: www.worcestershire.nhs.uk DNAR form ● Stays with the patient ● Documented within primary care records, OOH, WMAS, hospital notes

40. DNAR form

41. Find out more online: www.worcestershire.nhs.uk Discussing resuscitation ● Carefully consider whether or not to inform the patient of the decision ● In most cases a patient should be informed ● For some patients the information will be unnecessarily burdensome and of little or no value. ● Others will want detailed information about their care and want to be fully involved in planning for the end of their life. ● Information should never be withheld because conveying it is difficult or uncomfortable for the healthcare team. ● Forms are kept in the home so patients/family may find out anyway

42. Find out more online: www.worcestershire.nhs.uk Discussing resuscitation ● Some patients may ask for CPR to be attempted, even if the clinical evidence suggests that there is only a very small chance of success. ● Provide realistic information about the nature of CPR and the likely risks ● If patients still ask that no DNAR decision be made, this should usually be respected. ● Confusing: ●Doctors cannot be required to give treatment contrary to their clinical judgement, ●but should be willing to consider and discuss patients’ wishes to receive treatment, even if it offers only a very small chance of success or benefit. ● Can always ask for a second opinion

43. Find out more online: www.worcestershire.nhs.uk Summary ● Advance care planning ●What, when, who, how? ●Advance statement ●Advance decision to refuse treatment ●Documentation ● Resuscitation ●Facts ●Discussion ●Documentation

44. Find out more online: www.worcestershire.nhs.uk References/Useful websites ● Advance decisions to Refuse Treatment. NHS EOL Care Programme & NCPC. 2008 ● Capacity, care planning and advance care planning in life limiting illness: A guide for Health and Social Care Staff. NHS EOL Care Programme & NCPC. 2011 ● www.endoflifecareforadults.nhs.uk www.endoflifecareforadults.nhs.uk ● ELCA Advance care planning modules at http://portal.e-lfh.org.ukhttp://portal.e-lfh.org.uk ● Decisions relating to cardiopulmonary resuscitation: A joint statement from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing. October 2007