25. Taken from GSF Prognostic Indicator guide 2008 High Low Function Time Cancer High Low Function Time Fraility/Dementia High Low Function Time Organ Failure GP ’s Workload Ave 20 Deaths per GP per year
43. Valid ADRTs I wish to refuse the following specific treatments:- In these circumstances:- Artificial (mechanical) breathing machine If I have had a severe stroke with little chance of recovering consciousness Antibiotics If my dementia means that I cannot not make the decision, in the event that I have a severe chest infection that might threaten my life. Artificial feeding (via a tube or drip) When my dementia has deteriorated to the point that I cannot swallow safely, even with the help of others
- LARGE NUMBER OF DEATHS EACH YEAR 2/3RDS OVER 75 YRS TOO MANY DEATHS OCCUR IN Hospital TOO FEW in other settings
Over the last 10 yrs health policy has sought to redress this & reduce hospital deaths. The public in the main want to die at home Many receive E oL good care but many do not and do not die where they would wish.
It offer a map or guide for now and future. Be aware the ‘map is not always the territory’ as we will see later.
What is covered? Any aspect of future health and social care, such as where the individual wants to be cared for now and in the future, and where they want to die. ( Always be aware of considering if there are the resources to support choices a person may make, and being aware that their circumstances may change,). Who do they want told when their condition deteriorates? Do they want to be told when death is near? Who do they want to be involved in making decisions regarding their care? Are there things they want to avoid happening such as admission to hospital? Who completes it? It is written by the individual who has the capacity to make the statement. It may be written with the support from professionals, and relatives or carers. What does it provide? It covers an individuals preferences, wishes, beliefs and values about future care to guide best interest decisions in the event an individual has lost capacity to make decisions. Is it legally binding? No – but it must be taken into account when acting in the individuals best interests How does it help? It makes the MDT aware of an individuals wishes and preferences in the event the individual looses capacity. Does it need to be signed and witnessed? A signature is not required but its presence makes it clear whose views are documented. Who should see it? The patient is supported in its distribution, but has the final say on who sees it. PPC What is this document? A non- legally binding document which represents a persons hopes and wishes, completing it is entirely voluntary, it can be verbal or written informally, and can form part of an advanced care plan. Who completes it? The document is completed by people who want to discuss their wishes, future care and treatment, the focus is on what is important for the individual, also for those with progressive life limiting disease. The focus is on comfort and QOL. The purpose of the document is to facilitate provision of care for the person consistent with their wishes. As well as aiming to establish the patients wishes regarding current and future care it should also act as a trigger for appropriate referral to other services. Thereby enabling anticipatory planning of future care and instigate communication with other HCP ’s . It can facilitate decisions taken in the best interests of a person who lacks capacity to make decisions themselves. What are the triggers? Being eligible for the DS1500, the AA or DLA under special rules. ( expect to live no longer than 6 months). Being on the GSF register. Potentially curative treatment no longer possible or declined. An individual expressing a wish to discuss an advance decision. What is done with it? It is the individuals personal responsibility to inform professionals of the PPC ’s existence, a copy should stay with the patient, one to the GP one to other key involved professionals, other services likely to be involved with the persons care should be alerted such as the out of hours service. If after completing the document the person becomes unable to make decisions, the ppc will be taken in to account Is this document used to refuse treatment? Gives the ability to state what treatment you may or may not want but does not give the right to those treatments. To refuse treatment is a separate document ADRT Ensure the ppc is reviewed regularly, feelings needs and wishes change, the document needs to reflect these changes.
FOR SOME PATIENT GROUPS IT IS OBVIOUS THAT THEY ARE DECLINING Other Groups it is much more difficult to judge. GSF prognostic indicator guidance on each of the main chronic disease groups.
LOOKING AT THE GRAPH TAKEN FROM THE GUIDANCE & COMPARING THE DISEASE TRAJECTORIES 1 – CANCER – PATIENTS ARE STABLE FOR A WHILE AND THEN TEND TO DECLINE FAIRLY DRAMATICALLY 2 – ORGAN FAILURE such as HEART FAILURE, COPD , RENAL FAILURE ARE MUCH MORE DIFFICULT TO PREDICT, THEY CAN DETERIORATE & THEN STABILISE AGAIN 3 – FRAILTY & DEMENTIA DECLINE DRAMATICALLY OVER TIME WITH VERY POOR PERFAORMANCE STATUS .. THEY BOB ALONG AT A VERY FRAIL LEVEL BEFORE ULTIMATE DEATH.
SELF EXPLAINATORY.. BUT SOME OF THE FOLLOWING TRIGGORS ARE USEFUL TO THINK ABOUT...
OFTEN AT REFERRAL TO A SPC TEAM DISCUSSIONS HAVE TAKEN PLACE ALREADY AT REFERRAL TO SUGGEST THEIR CONDITION IS UNTREATABLE & WILL ULTIMATELY LEAD TO THEIR GRADUAL DECLINE A DS1500 ALLOWS AN APPLICATION FOR HIGHER RATE ATTENDANCE ALLOWANCE/DISABILITY LIVING ALLOWANCE IF UNDER 65YRS IT IS A MEDICAL REPORT THAT HAS TO BE COMPLETED BY THE GP & GOOD PRACTICE WOULD BE TO DISCUSS WITH AN INDIVIDUAL WHY IT IS BEING COMPLETED AND WHAT THE IMPLICATION OF IT IS ...ie, PROGNOSIS < 6 MONTHS. OFTEN AT ASSESSMENT OF CARE NEEDS DISCUSSIONS LEAD TO THE FUTURE & WHAT AN INDIVIDUAL WOULD WANT/NOT WANT TO HAPPEN
THINKING ABOUT INIATING DISCUSSIONS....WE FEEL TROUBLED BY THIS IF WE ARE ALL HONEST!! I AM NOT INTENDING TO DISCUSS COMMUNICATION IN ANY DEPTH TODAY BUT THERE ARE SOME SIMPLE STRATEGIES THAT CAN BE REALLY HELPFUL TO THINK ABOUT..... TIMING SETTING ....RIGHT TIME, RIGHT PLACE, RIGHT PEOPLE PRESENT & PRIVACY!! Avoid interruptions/distractions GREEt appropriately....SHOWS MUTUAL RESPECT NON – VERBAL COMMUNICATION IS REALLY IMPORTANT ... MAINTAIN EYE CONTACT, POSTURE, FACIAL EXPRESSIONS,SHOWS ACTIVE LISTENING, ALLOW PERSONAL SPACE THE PACE & TONE/PITCH OF YOUR VOICE IS IMPORTANT An open dialogue ......QUESTIONS WHICH CANNOT BE ANSWERED BY A ‘YES’ OR ‘NO’ ALLOWS EXTRA INFORMATION, FEELINGS UNDERSTANDING TO BE CONVEYED.
THINKING ABOUT AN INDIVIDUALS FAMILY & FRIENDS THE SAME PRINCIPLES APPLY Outside pressures .. From family/organisation ....RESPOND TO CUES BE SENSITIVE
SELF EXPLAINATORY ...READ Positive communication can be very therapeutic for individuals because it gives them an opportunity for their beliefs/feelings to be expressed.
So, why do we need the MCA? Before the MCA came into existence there was evidence that: People ’s autonomy not always respected People written off as incapable of making a decision because of diagnosis No clear legal authority for people who act on behalf of a person lacking mental capacity Limited options for people who wanted to plan ahead for a time when they might lack capacity Mental capacity issues potentially affect everyone Over two million people lack the capacity to make some decisions for themselves, for example:
We must allow people to make unwise or eccentric decisions if they have the capacity to do so….. This is where we get into terrible ethical dilemmas – and sometimes these cases reach the papers. Referring back to the core competency slide ….. Its about getting the right person to address the issue. Most of us will be working in the bottom two tiers: we need an understanding of and awareness of the risks and benefits of ACP and the related guidance; and we need to be able to facilitate AcP discussions/advance statements. If the person doesn ’t have capacity is there a proxy to make the decision?
If you are unsure re capacity ask a senior colleague, get a second opinion. In cases where there are concerns about capacity it may be necessary that the courts decide. Court appointed deputies more likely to be for financial than welfare decisions An IMCA is a new statutory advocate. Section 36 of the Mental Capacity Act enables the Secretary of State and Welsh Ministers to make regulations as to the functions of IMCAs. The purpose of the IMCA is to represent vulnerable people who lack capacity to make important decisions about serious medical treatment and change of accommodation where they have no family and friends available for consultation about those decisions. There is a duty to instruct an IMCA where a person who lacks capacity has nobody to represent them in the following prescribed circumstances:providing, withholding or stopping serious medical treatment;moving a person into long-term care in a hospital or care home;moving the person to a different hospital or care home.The only exception to this rule can be where an urgent decision is needed.
Teach in an even-handed way, encouraging critical thinking rather than persuading towards a particular change in practice • Recognise that “assess at time” is not only valid but may often be desirable • Make sure that choice is seen accurately, as; “would you like this documented?” rather than “would you like this or that intervention?” • Recognise when our discussions are intrusive rather than welcomed • Be prepared to be more transparent about the extent to which our efforts are about saving resources
