- 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.
Taken from National EoL care intellegence network Underlying' cause of death is defined as: (i) the disease or injury that initiated the train of events directly linked to death; or (ii) the cirumstances of the accident or violence that produced the fatal injury. 'Contributory' cause of death is defined as part of the causal sequence of events leading to death, or contributing to the death but not part of the causal sequence.
That contrasts sharply with the figure for deaths overall: nationally 58% of us die in hospital and only 16% in care homes.
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.
A lot of people get a bit scared at the thought of being asked to be involved with a legally binding document but I hope after today you feel more comfortable with your role. ACP in realise its not something to be afraid of. To understand the legalities behind ACP it is important to have some understanding of capacity and the mental capacity act. Brought into existence to help patients but also helps us as clinicians to act in a patients best interests
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.
Joy Tomkins, 81, grandmother from Norfolk Jan 2011 tatoo
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
"This is how i want to die" DPT Study Day 16th September 2011
“ This is how I want to die” Politically correct but ethically sound? How do we, and should we, discuss dying with people who have mental and physical illness?
Who ’s who? <ul><li>Kerry Macnish – Education Manager </li></ul><ul><li>Beth Daw and Jane Oliver CNS Exeter Community Palliative Care Team: </li></ul><ul><li>Tim Harlow Consultant in Palliative Medicine </li></ul>
Aims <ul><li>To raise your awareness and understanding of advance care planning (ACP) and to promote its use as part of the solution to improving end of life care </li></ul><ul><li>To consider how to apply ACP to your workplace and the skills and competencies required to do so. </li></ul><ul><li>To refer you to further tools, documents and resources about ACP that can assist you </li></ul>
3 key messages about advance care planning <ul><li>It ’ s not new, its out there….be ready and open and a little cautious too </li></ul><ul><li>You are not on your own </li></ul><ul><li>It is rarely a one off event- but a series of conversations held over time </li></ul>
Why Advanced Care Planning? (ACP) <ul><li>Around half a million people die each year. </li></ul><ul><li>2/3rds are over 75yrs & die from chronic illnesses such as heart disease, cancer, CVA, COPD, neurological disease & dementia. </li></ul><ul><li>58% of deaths occur in Hospital, 18% at home, 17% in Care homes, 4% Hospices, 3% elsewhere. (DoH, 2008) </li></ul>
Why Now? <ul><li>End of Life Care Strategy </li></ul><ul><li>Drive to reduce acute hospital admissions </li></ul><ul><li>Health policy over last 10 years moving towards reducing hospital deaths (DoH, 2007, 2008). </li></ul>
Why Now? <ul><li>Public surveys demonstrate most people wish to die at home (DoH, 2000). </li></ul><ul><li>Many receive good care & their preferences & wishes at End of Life (EoL) are met. </li></ul><ul><li>However, many do not & do not die where they would choose. </li></ul><ul><li>SW SHA funding for education in ACP- Hospiscare commissioned by NHS Devon to roll out 2010/2011 </li></ul>
Why ACP? ...continued <ul><li>Poor EoL experience leads to family dissatisfaction & complicated bereavement for surviving relatives. </li></ul><ul><li>Evidence to support that pre planning and using ACP is of benefit to most patients and families. </li></ul><ul><li>Used extensively across the world. </li></ul>
Unlike other conditions, most people with dementia, including Alzheimer ’s, die in care homes. Of those who died with one of these conditions recorded as the main underlying cause of death, some 59% died in a nursing or residential home compared to 32% in hospital. The report also shows that people who die from cardiovascular disease, cancer or respiratory illness are significantly more likely to die in a care home if dementia including Alzheimer ’s is a contributory factor in their death.
What is Advanced Care Planning? <ul><li>Beth Daw </li></ul><ul><li>Community Clinical Nurse Specialist </li></ul><ul><li>Hospiscare </li></ul>
Advance Care Planning <ul><li>“ Caring for people at the end of their lives is an important role for many health and social care professionals. One of the key aspects of this role is to discuss with individuals their preferences regarding the type of care they receive and where they wish to be cared for” </li></ul><ul><li> (Mike Richards 2007) </li></ul>
What is Advanced Care Planning? <ul><li>ACP is a voluntary process to which the patient must agree to and to sharing the information. </li></ul><ul><li>It is a discussion about future care between an individual and their care providers(irrespective of discipline). </li></ul><ul><li>The discussion is to make clear an individual ’s wishes and will usually take place in the context of an anticipated deterioration in the future. </li></ul>
What is ACP? <ul><li>It may include or clarify: </li></ul><ul><li>Their understanding of their illness and prognosis, treatment options and availability of these. </li></ul><ul><li>2. Their wishes, values, beliefs and preferences or goals for care. </li></ul><ul><li>3. Any concerns they may have. </li></ul><ul><li>Is helpful when guiding care when a person has lost capacity. </li></ul><ul><li>If the individual wishes, their family and friends may be included. </li></ul>
What is ACP? <ul><li>Conversations and requests should be clearly documented and then... </li></ul><ul><li>Communicated to others in the care team including Out of hours teams. </li></ul><ul><li>Be reviewed regularly and if the patient should change their mind in between reviews. </li></ul><ul><li>ACP usually involves more than one team/discipline. </li></ul><ul><li>Preferred Priorities for care (PPC) is the documentation used to record advanced care plans. </li></ul>
Preferred Priorities of Care <ul><li>What is this document? </li></ul><ul><li>What is its purpose? </li></ul><ul><li>Who completes it? </li></ul><ul><li>What is done with it? </li></ul><ul><li>What if, after completing the PPC, the person becomes unable to make decisions? </li></ul><ul><li>Is this document used to refuse treatment? </li></ul>
Strategies in instigating an Advance Care Plan <ul><li>Jane Oliver </li></ul><ul><li>Community Clinical Nurse Specialist </li></ul><ul><li>Hospiscare </li></ul>
<ul><li>“ Contrary to concerns by GP’s about patients becoming distressed or rejecting the conversation, the study found 90% choose to continue the conversation when initiated by their GP. Patients who talked about their preferences with their GP were more likely to be placed appropriately on the EoL register, and have their preferred place of death & core preferences added to their medical records.” </li></ul>NCPC Project (2010) - ”dying to talk to your GP?”
Identification of EoL patients that may benefit <ul><li>Many with chronic illness(s) reach a point where it is evident they are going to die from their condition. </li></ul><ul><li>Other conditions can be difficult to accurately predict. </li></ul><ul><li>Gold Standards Framework Prognostic indicators (GSF 2008) provides guidance. </li></ul>
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
The ‘triggers’ <ul><li>The surprise question: would you be surprised if this individual were to die within 6 – 12months? - ‘gut instinct’ </li></ul><ul><li>Clinical Indicators of Advancing Disease , i.e. Reduced physical performance, frequent admissions to hospital/out of hours services. </li></ul><ul><li>An individual opts for comfort measures /opts out of curative treatment . </li></ul>
Triggers to consider <ul><li>Referral to Specialist Palliative Care team. </li></ul><ul><li>Following diagnosis of a life limiting condition ie. MND, advanced cancer, dementia. </li></ul><ul><li>At instigation of DS1500 for AA/DLA. </li></ul><ul><li>At an assessment of an individuals needs, complex care package, carer distress, respite care. </li></ul><ul><li>Admission to a care home. </li></ul>
Initiating Discussions <ul><li>Timing & setting need to be right, privacy. </li></ul><ul><li>Non-verbal Communication, eye contact, attentive listening. </li></ul><ul><li>An open style of dialogue.. </li></ul><ul><li>How do you feel things are with you? </li></ul><ul><li>How do you see things going from here? </li></ul><ul><li>Have you thoughts/feelings about becoming less well ? </li></ul><ul><li>Are there things that would concern you should this happen? </li></ul>
Addressing Family & Friends <ul><li>How do you think he/she is compared to last time I came/last week? </li></ul><ul><li>I feel he is less well and it concerns me.... </li></ul><ul><li>Are there things you would like to discuss? </li></ul><ul><li>Respond to cues/not to outside pressures; Listening is important. </li></ul><ul><li>Summarise back the main points; check your understanding. </li></ul>
To Summarise <ul><li>Predicting prognosis is difficult – ‘gut instinct’ is important! </li></ul><ul><li>Take the lead from the individual but may need to initiate; listen for the cues. </li></ul><ul><li>Has to be a voluntary process. </li></ul><ul><li>Check your understanding; Reflect back. </li></ul><ul><li>Conclude and document; may change their mind later. </li></ul>
Mental Capacity Act - 2005 <ul><li>Empowerment for adults who lack capacity </li></ul><ul><li>Protection for adults who lack capacity and those who care for them </li></ul><ul><li>Choice - by allowing people to appoint those they trust to make decisions for them </li></ul><ul><li>Clarification of the law in relation to advance decisions to refuse treatments </li></ul>
Four tests <ul><li>Can they understand the information? </li></ul><ul><li>Can they retain and believe the information? (only needs to be for long enough to allow them to use and weigh up the information) </li></ul><ul><li>Can they use and weigh up the information? </li></ul><ul><li>(ie can they consider benefits and burdens?) </li></ul><ul><li>Can they communicate their decision by whatever means? </li></ul>
Points to remember <ul><li>Capacity is Decision Specific </li></ul><ul><li>You must presume capacity unless evidence exists otherwise </li></ul><ul><li>People should be supported to make their decisions </li></ul><ul><li>Anything done for or on behalf of a person who lacks capacity should be the least restrictive of their basic rights and freedoms </li></ul><ul><li>People are allowed to make “unwise or eccentric decisions” </li></ul>
<ul><li>Court appointed Deputies </li></ul><ul><li>Independent Mental Capacity Advocates </li></ul>
Advance Decision to Refuse Treatment (ADRT) <ul><li>Made when a person over 18 has capacity. </li></ul><ul><li>Will come into effect only when the individual has lost capacity to give or refuse consent. </li></ul><ul><li>A decision relating to a specific treatment in specific circumstances. </li></ul><ul><li>If it includes refusal for life sustaining treatments they must be in writing, be signed and witnessed and state clearly that “ the decision applies even if my life is a t risk” </li></ul>
ADRT <ul><li>Advance decisions that meet all the requirements of the MCA are legally binding (guidance available in code of practice for MCA) </li></ul><ul><li>To be binding it must be both Valid and applicable. </li></ul><ul><li>If binding, the person has taken responsibility for the decision </li></ul><ul><li>If not binding, must still be considered when assessing best interests. </li></ul>
Useless ADRT <ul><li>“ If I go completely dotty just let me go and stop feeding me” </li></ul><ul><li>Feeding is basic care which cannot be refused by an ADRT </li></ul><ul><li>Too vague </li></ul><ul><li>Still worth taking into account when planning a person ’s treatment in their ‘best interest’ </li></ul>
Valid ADRT <ul><li>I now have MND and benefit from PEG feeding. As my condition deteriorates, if I should lose consciousness and am not expected to recover after 24hrs, I wish feeding, hydration and any other life prolonging treatment such as antibiotics to be withdrawn or withheld although medication such as painkillers for my immediate comfort can be used. This decision to apply even if my life is at risk ” </li></ul>
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
When is an ADRT not valid? <ul><li>If medical treatment has changed significantly since the ADRT was made </li></ul><ul><li>If it is not specific enough to include current circumstances – home, family and health </li></ul><ul><li>If ‘out of date’ - good practice to update every 2 years </li></ul><ul><li>If a LPA has been drawn up covering the same treatment </li></ul><ul><li>If a person has recently behaved in a way to suggest they have changed their minds </li></ul><ul><li>If there is any evidence of duress </li></ul><ul><li>If there is any evidence the patient has withdrawn the ADRT </li></ul>
What can an ADRT not do? <ul><li>An ADRT cannot:- </li></ul><ul><li>Request specific treatment </li></ul><ul><li>Stop basic care </li></ul><ul><ul><li>nutrition/hydration by mouth </li></ul></ul><ul><ul><li>basic cleanliness </li></ul></ul><ul><li>Ask a HCP to end or intentionally shorten a patients life </li></ul>
Lasting power of Attorney (LPA) <ul><li>An LPA is a statutory form of power of attorney is created by the MCA. A person with capacity can choose a person (an ‘attorney’) to take decisions on their behalf if they subsequently loose capacity. </li></ul><ul><li>Two separate documents: </li></ul><ul><li> Property and Financial Affairs </li></ul><ul><li> Health and Welfare </li></ul><ul><li>Must be registered with the Office of the Public guardian. (Therefore this may take time to put in place) </li></ul>
Resuscitation- allow natural death (AnD) <ul><li>Are not obliged to offer treatment to pts that we think are futile. </li></ul><ul><li>It is good practice to discuss this with patients wherever possible but..not if it is going to cause them distress and do them harm. </li></ul>
ACP and DNAR <ul><li>Success rates poorly understood </li></ul><ul><li>Inappropriate resuscitations can lead to distressing, undignified deaths </li></ul><ul><li>May result in transfer to hospital when death requested at home/care home ect </li></ul><ul><li>May be part of a PPC/LCP which is not clarified/respected </li></ul><ul><li>DNAR requests within an ADRT are not always accessible- and paramedic crews need to see a signed document to withhold resus attempt if responding to a 999 call. </li></ul>
Questions to think about… <ul><li>Are you ready to be asked? </li></ul><ul><li>If planning to instigate with someone….who might be best placed to do so? </li></ul><ul><li>Is now the right time? </li></ul><ul><li>Which aspects do I raise and which do I feel competent to respond to? </li></ul><ul><li>Who else might need to be involved? </li></ul><ul><li>Which documents/tools (if any) might be useful for this patient/client/user/carer? </li></ul><ul><li>What support is there for me? </li></ul>
Summary points <ul><li>The process of ACP can enable people to think about, discuss and have their wishes recorded in advance of an anticipated decline in their health. </li></ul><ul><li>ACP conversations and documents can be referred to if/when a person lacks the capacity to make a decision about their care and treatment. However, it also guides and can instruct loved ones, health and social care staff to plan and deliver appropriate and realistic care for each individual. </li></ul><ul><li>Not desirable for everyone. We need to think critically about if, how and when we implement ACP into practice and our assessments. </li></ul>
So..ACP is more likely to benefit people when it takes place:- <ul><li>At the right time </li></ul><ul><li>Within the right environment </li></ul><ul><li>Using the right skills </li></ul><ul><li>For the right reasons </li></ul>
<ul><li>My ADRT </li></ul><ul><li>Last night my husband and I were in our sitting room. I said to him “I never want to live in a persistent vegetative state, dependent on some machine..and fluids from a bottle” </li></ul><ul><li>He got up, unplugged the computer and threw out my wine </li></ul>
What's happening in Devon? <ul><li>End of life register is now live (Adastra) </li></ul><ul><li>Preferred priorities of care (PPC) and Advanced decision to reuse treatment (ADRT) documents are approved for NHS Devon </li></ul><ul><li>Just in Case bags are in all GP practices across Devon </li></ul><ul><li>GSF in practices and nursing homes </li></ul><ul><li>New community worker in EOL care pilot </li></ul><ul><li>Working to develop a Devon wide DNAR policy probably a treatment escalation plan (TEP) </li></ul>