ACP Learning Pack

ACP Learning Pack. Session Four Session Four: Crucial care decisions, including attempting resuscitation and the role of the GP in ACP ACP Learning Pack

ACP Learning Pack. Session Four Groupwork One • What particular aspects of care would you like to know about to help you care for someone as they would like, particularly at the end of their life?

ACP Learning Pack. Session Four Groupwork Two When do you not attempt resuscitation on an older person who lives in a care home? Questions to consider:- • If a resident collapses unexpectedly do you always attempt resuscitation? • Are there some residents for whom you would not attempt resuscitation? • Who makes the decision? • Is the decision recorded? If not how do all staff know whether to attempt resuscitation or not?

ACP Learning Pack. Session Four Andrew Makin Summary of an interview with Andrew Makin, Director of Nursing of the Registered Nursing Homes Association. He gives an overview of the issues to consider in respect of resuscitation decisions in care homes for older people.

ACP Learning Pack. Session Four 1. What do we mean by the term resuscitation? • It’s a very narrow definition. • It’s only cardiac massage or cardio-pulmonary resuscitation. • It doesn’t include other measures which might be life saving, like antibiotic treatment. • Need to distinguish between 'Do not resuscitate‘ (DNR) and 'Do not attempt resuscitation‘ (DNAR). • The process does not guarantee success, therefore DNAR is the correct term.

ACP Learning Pack. Session Four 2. In care homes for older people, how appropriate is it to know whether we should attempt resuscitation or not for any individual? • It is essential to know, so far as we can find out. • We need to know when to intervene and when not to intervene. • We are responsible for the whole of the person’s wellbeing in our care; we can’t leave out the issue of resuscitation. • We need to know as much as we can if our delivery of care is going to be successful (in the sense of what residents want from us).

ACP Learning Pack. Session Four 3. Would you expect there to be any difference in the approach with care homes with nursing and care homes for personal care? • The moral imperatives are the same - a duty to do the best you can. • But Registered nurses have an additional professional responsibility laid out in the Code of Practice to keep their practice up to date. • The 'Bolam' test applies - what would a reasonably experienced nurse do in these circumstances? • So, there is an additional duty laid on professional nurses

ACP Learning Pack. Session Four 4. So when is attempting resuscitation appropriate and when is it not? • It’s inappropriate when it’s not wanted. • It’s potentially an assault and is intrusive if it’s not wanted. • It could also be inappropriate because the likelihood of success is very low. • In hospital, meaningful survival, i.e. well enough to go home, is about 20%. In the community it is around 1%. • It could also cause other damage in the process. • It could be potentially cruel and unethical to offer a treatment that won’t work.

ACP Learning Pack. Session Four 5. What part do you think the older person should have in making this decision about whether resuscitation should be attempted or not? • Their part should be central; it should be their decision. • Only the resident can give or withhold consent for treatment. • BUT their wish not to discuss end of life care and resuscitation must be respected. • Staff should raise the issue and ensure they know they can have that discussion with us at any time.

ACP Learning Pack. Session Four 6. There will be some people who lack the mental capacity to make those sort of decisions or enter into those discussions. How should staff proceed then? • A dilemma! • The Mental Capacity Act 2005 requires staff to demonstrate that the person lacks capacity before deciding on their behalf • If lack of capacity is demonstrated then staff can discuss end of life issues with another relevant person(s)‏ • It could breach confidentiality by discussing with other people(e.g. a spouse) if MCA not complied with

ACP Learning Pack. Session Four 7. Can you explain what is meant by the “default” position in relation to attempting resuscitation? • The “default” position is the safe position. • Ringing 999 and putting the responsibility onto a paramedic team instead of taking on the responsibility ourselves. • But it is an unsatisfactory position professionally speaking - because we don’t offer any other treatment by “default”. • It’s safe legally, but may be morally questionable.

ACP Learning Pack. Session Four 8. Are there any other disadvantages do you think to the default position? • The“default”position means that once you start CPR, you can’t stop. • The resident's last minutes, their last hours, could be in noise and chaos in a hospital emergency situation. • This is upsetting for the family. • It is unsatisfactory professionally because we can’t claim that we did our best; that we satisfied the needs of that person. • Therefore, it’s an unsatisfactory position all round.

ACP Learning Pack. Session Four 9. What do you see as the role of the GP in this decision making process? • The GP’s role is central – the GP is the gatekeeper to care. • GPs see a typical resident maybe for less than 20 or 30 minutes at a time for a routine visit in a month. • On the other hand, care home staff know residents very well and can help to inform on the person's best interests, if they’re not able to express it themselves. • So if a care home were to present a policy for each individual for the GP to confirm, this could be the best solution for the resident and the GP.

ACP Learning Pack. Session Four 10. Could you explain what is meant by the “surprise question”, which we find in the Gold Standards Framework? Does this question help in resuscitation decisions? • The surprise questionis “Would it be a surpriseif this person were to die in the next 12 months?” • It is reasonable to expect many care home residents will die within the next 12 months. • If they are likely to die in the next 12 months, it is reasonable to treat them with the same services, the same access to resources, the same planning as if you knew for certain that they were going to die in the next 12 months. • This perspective enables us to plan accordingly and include, for example, resuscitation in that planning.

ACP Learning Pack. Session Four 11. Do you think there are any differences in approaching the decision making process in a care home for older people, compared to another type of care setting? • Yes, because with older people they are inevitably approaching the natural end of their life. • We know many of our residents are going to leave us, in this way. • In contrast, in a care home for younger people for example , staff may leave and retire before that resident dies, and your colleagues will take over.

ACP Learning Pack. Session Four 12. Could you explore the differentiation in attempting resuscitation in (for instance an emergency situation where someone is choking) in comparison to when someone collapses suddenly in what may be a natural death. • If there is a reversible cause (e,g. cardiac pacing or if somebody chokes, which could happen at any time) it’s reasonable to exclude that from the decision that has already been made. • This has to be separate from the decision not to attempt resuscitation. There is a clear distinction if there is a reversible cause.

ACP Learning Pack. Session Four 13. Could you recommend any key documents which could help staff in care homes to devise their own policy. • The Mental Capacity Act 2005. Gives clear guidance on how to establish a person's capacity, or lack of it, and whether you proceed to making the decision on their behalf. • A joint publication called 'Discussions Around Cardio-Pulmonary Resuscitation' published in October 2007 by the BMA, the RCN and the Resuscitation Council. Explores the ethical issues and the imperatives around resuscitation, (but it does not quite fit the care home situation).

ACP Learning Pack. Session Four Conclusion • There is a lack of guidance and information in the independent sector to help make these important decisions. • Therefore the “default” position is often adopted. • It is good practice to discuss and have a clear policy for each person on whether or not to attempt resuscitation.

ACP Learning Pack. Session Four Groupwork Three What do you see as a GP’s role in Advance Care Planning?

ACP Learning Pack. Session Four Dr Harry Yoxall An interview with Dr Harry Yoxall, who is Secretary of Somerset Local Medical Committee. He gives an overview of a GP’s perspective of ACP in care homes for older people and the role of the GP.

ACP Learning Pack. Session Four 1. Are any advantages for older people in care homes in having an advance care plan? • It’s helpful for the individual to know that their own needs and requests will be met as best a GP can and that’s much easier if it’s written down. • Care home staff can be more confident in doing what the older person would want. • For the professionals (e.g. Doctors & Nurses) it is invaluable particularly if they don’t know that resident very well. This is more prevalent nowadays, with more large GP practices or with an external ‘out-of-hours’ service.

ACP Learning Pack. Session Four 2. Are there any other advantages for the GP in a person having an advance care plan? • GP may have to make quite difficult decisions - sometimes life & death decisions about what the best treatment is going to be • If the GP has some idea about what the individual resident would like, this is invaluable. • The GP can feel that he or she is doing what the person would want and what is most appropriate in the circumstances.

ACP Learning Pack. Session Four 3. What would you see as the GP’s role in advance care planning? • It’s an advisory role • GP has no legal or statutory obligation to be involved in the process. • With patients the GP has known for a long time it’s obviously something the GP can contribute a lot to. • More widely, GPs should encourage care homes to undertake ACP for their residents for all the advantages identified • The GP can also be a trusted advisor and occasional contributor to the process.

ACP Learning Pack. Session Four 4. Who would you see as the key people involved in helping an older person complete an advance care plan? • Firstly and most importantly the older person themselves. • Second most important must be the people who have day-to-day responsibility for caring - the staff of the care home. • Of course family is important as well as other medical professionals, e.g. GP, District Nurses and other professionals. • Also, people who are important in that individual’s life, e.g. Ministers of religion or other significant people, including even a lawyer sometimes.

ACP Learning Pack. Session Four 5. If a person is thinking about making an advance decision to refuse treatment, particularly life sustaining treatment, would the GP be the person they should discuss this with? • Yes, in part. Once some of the initial work is done, the GP can be called. • It’s very helpful if some (or all) of the appropriate paperwork and initial discussions with the older person and family have been done before the GP has been consulted with. • Residents will have very specific things they do & don’t want done – they don’t want a tube in their throat or similar procedures. • Occasionally there will be things that are just misunderstandings that need to be clarified (and the GP can help with these). • If it’s a GP who knows the patient well, it’s a matter of often 20 - 30 minutes of conversation with the older person. • The GP’s role is to clarify clinical and medical issues

ACP Learning Pack. Session Four 6. What about resuscitation decisions? In your experience is this discussed and recorded by the GP with an older person? • Not nearly enough but it’s very important. Nobody should ever assume that resuscitation shouldn’t be attempted in an older person just because of their age or disability but we must take into account their views. • I’d really like care homes to have the right kind of paperwork and the right kind of experience and training in resuscitation decisions, so that this is just a routine part of the process of care. • Most older people do have quite a clear view as to what they want – GPs should be encouraged to have these discussions.

ACP Learning Pack. Session Four 7. Apart from resuscitation decisions, are there any other treatments which you think it would be a good idea to discuss with a person beforehand in advance of when they might possibly need that treatment? • That’s a very subjective question. There will almost always be some things that it would help for the GP to know about the patient’s wishes but they’ll vary quite a lot from person to person. • Some individuals have very strong feelings about certain kinds of treatment, perhaps for religious or cultural reasons or sometimes because they have strongly held personal views. • It’s something that it’s important to ask, but being realistic, it’s not something GP’s are going to get round to doing. • But if the care home staff can get to know residents’ likes and dislikes and then prime the GP (or record it in an ACP) during a visit that’s very helpful.

ACP Learning Pack. Session Four 8. It sounds like you’re saying that these sort of subjects should be raised as part of the ongoing care planning process? • Absolutely, and revisited again from time to time. • Somebody may make a resuscitation decision or a decision about treatment and then over a period of time they’re views may change. • A decision that was made two three or four years ago may be completely wrong. • A GP has to make decisions at the time, according to the law. • If an ACP is revised from time to time, you’re much more likely to be able to give residents the treatment they want.

ACP Learning Pack. Session Four 9. When it comes to decision making about treatment, what are GP’s good and not so good at? • GPs are very good at making decisions quickly. • GPs are also very good if it’s a technical or a medical decision, e.g. whether the patient needs antibiotics, or do they need to go to hospital. • GPs are not nearly so good at taking time to really understand what are the patient’s wishes • GPs are also not so good about consulting relatives and the care home staff. • So to have something in writing, some sort of framework that the GP can refer to or the care home show to the GP when they arrives is extraordinarily valuable.

ACP Learning Pack. Session Four 10. In most cases, in a care home the GP will be the decision maker when it comes to treatment if the person is lacking the capacity to decide at that time. But what contribution can care home staff make to this decision making process? • Care home staff are absolutely central to it. • If the GP doesn’t know that individual very well, they are legally and morally obliged to make sure that they can get as much information as possible to ensure they reach the right decision. • The care home staff who are looking after that person day-by-day are much more likely to know what the person would like to have done. • I think we need to be careful not to let people run away with the idea that if it’s not already written on the proper legal form that it doesn’t count. That’s definitely not the case. • Everything that the decision maker can learn about that individual is important, so it doesn’t matter if it isn’t written down so long as the care home staff are aware of it – preferably had recorded it in their records but even if its only on their experience, it all helps.

ACP Learning Pack. Session Four 11. What would you see as possible problems and constraints to care home staff offering advance care planning? • Unfamiliarity - it’s not something that care home staff have traditionally done. • People are worried because it’s appears legal and technical but that’s not the case. • Ideally, all the records should be filled in in exactly the right way, but that’s not what matters. What matters is making sure we can help reach the right decision for that individual older person and that requires good records • No records at all are just an embarrassment and obviously don’t help the process at all.

ACP Learning Pack. Session Four 12. So as far as advance care planning is concerned, is there anything you think the care home staff can do to help the GP be more involved in the process? • Make the appropriate records and have them ready to assist the GP in decision making. • Care Home staff need to have had preliminary discussions with the resident about their wishes • These should be recorded in a format which the GP can use to then talk to that resident about the technicalities of the medical elements. • Everyone can then be confident that they are doing what that resident really wants.

ACP Learning Pack. Session Four 13. In summary, would you like to make any comment about the place you see for advance care planning for older people? • I’d simply pose the question “If I or you were in a care home as an older resident, what would we want ?” • We would want to know that:- • our requests and requirements were met as best they could be. • that the people working with us and around us knew what we wanted according to our wishes. • that the professionals who were coming in, were going to make the right decisions on our behalf. • This is helped by having a really well-structured care planning arrangement in place and available for the GP. • Advance care planning is absolutely vital to giving people towards the ends of their lives the care and treatment they deserve.

ACP Learning Pack. Session Four Conclusion • Care home staff should have initial discussions with the resident about their wishes and have the record of this available for a GP at any time. This aids and speeds decision making. • Ask the GP to visit to discuss any medical or technical issues, especially in respect of advance decisions to refuse treatments and resuscitation decisions • Keep a clear record for all visiting GPs • Review ACP regularly • ACP will help in caring for a person as they would want

ACP Learning Pack