End of life care- post Liverpool

Dr Paul Paes Content

• What issues did Liverpool raise? • Where are we now? • Challenges in end of life care- • Uncertainty • Decision making • Communication Liverpool Care Pathway

• Developed in the 1990s to transfer hospice model of managing the last days of life to other settings • Provided checklist and guidance on managing key issues • Considered “best practice” by NICE, DoH

BUT………..

Liverpool Care Pathway

Specific issues in press

• That patients who were not dying were being put on the Liverpool Care Pathway (LCP) • By being put on the LCP, decisions were being taken which hasten a patient’s death (euthanasia) • Trusts were being rewarded for having patients on the LCP More Care Less Pathway 2013- Baroness Neuberger Independent review of the LCP • “It would seem that when the LCP is operated by well trained, well-resourced and sensitive clinical teams, it works well”. • Concerns- -“pathway” -Inappropriate use of painkillers and sedatives -Poor communication -Documentation tool or treatment decision -Senior clinician responsibility -Nutrition and hydration

• LCP should be replaced in next 6-12 months by an end of life care plan for each patient NICE- Care of Dying Adults in the last days of life 2015 Focuses on: • Recognising when a person may be in the last days of life • Communication • Shared decision making • Maintaining hydration • Pharmacological interventions • Anticipatory prescribing Five new Priorities for Care

1. The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.

2. Sensitive communication takes place between staff and the person who is dying and those important to them.

3. The dying person, and those identified as important to them, are involved in decisions about treatment and care.

4. The people important to the dying person are listened to and their needs are respected.

5. Care is tailored to the individual and delivered with compassion – with an individual care plan in place

What is the current end of life care picture? Place of death- Northern England SCN

HOSPITAL HOME

CARE HOME HOSPICE • Between 2013 and 2015 audits, there has been a broad front of improvements in nearly all aspects of care of the dying in hospitals • In many areas, trusts need to perform better against national policy drivers and protocols. • Unreasonably wide variations between organisations

Quality of care in last 3 months of life VOICES 2014: ONS (22,601 responses/ 49607) Quality of care by place of death VOICES 2014

We need to be careful to draw the right conclusions

• The current prevailing view: – People want to die at home – End of life care in hospitals is poor – People do not want to die in hospital – recognition of dying is poor and people go through investigations/ treatments that are unnecessary • The story may not be that simple Relief of pain by care setting VOICES 2014 Quality of care by setting/ service provider VOICES 2014 Did the patient die in the right place,

by place of death? VOICES 2014 Deceased preference 82% home, 8% hospice, 6% care home, 3% hospital Summed rankings of the importance of factors linked to a ‘good death’ for patients and their carers Davies et al, 2016 What is important for patients and families at the end of life? Virdun et al, 2015

PATIENT FAMILY Effective Communication and Expert care 1 shared decision making Expert care Effective Communication and 2 shared decision making Respectful and Respectful and 3 compassionate care compassionate care Trust and confidence in Trust and confidence in 4 clinicians clinicians -Adequate environment for care Financial affairs 5 -Minimising burden We need to be careful to draw the right conclusions A more realistic picture – People who may be dying want to feel safe, be communicated with and have confidence in the team looking after them. Location is not that important – Most people who are dying peacefully and know they are dying, want to die at home or in a hospice – When people are uncertain if they are dying, they want to be in hospital and want to live – If people are dying and feel scared or are symptomatic they want to be in a hospice or hospital Challenges in end of life decision making in acute settings

• Uncertainty • Decision making • Communication Not recognising that people are dying – “if the needs of those who are close to death are not recognised, their care cannot be planned or co-ordinated, which means more crises and distress for the person and their family and carers”

Poor symptom control

Poor communication – “healthcare professionals do not always have the open and honest conversations with family members and carers that are necessary for them to understand the severity of the situation, and the subsequent choices they will have to make” DNACPR decisions

• Decision-making practice related to resuscitation decisions is variable: patients receive inappropriate attempts at resuscitation because no one has discussed the decision with them in advance (NCEPOD, 2012) • Concern about the interpretation of the presence of a DNACPR form- DNAR decisions can lead to other appropriate treatments being withheld (Fritz et al. , 2010) • Court rulings Tracey 2014/ Winspear 2015 cases

• DNACPR signed without patient’s (Tracey) or relative’s/ carer’s (in patient lacking capacity- Winspear) knowledge on the basis of clinical futility • Courts: DNACPR decisions engage article 8 of European Convention on Human Rights “right to respect for private and family life” • Violation of human rights if patient with capacity or relatives/ carers not consulted before form signed • When the moral approach to dealing with conflicts is replaced by judicial interaction, the nature of communication changes profoundly. • Case law, professional guidance and clinical care are not fully in step • Professionals are forced to take a defensive stance or avoid decisions/ involvement in difficult aspects of

patient care (van Heijst, 2011 ) “A lot of us are worried about doing them [DNAR forms] without having conversations with families, and it’s not always possible to have those conversations. Whereas in the past we probably just would do a DNAR form, I’m making a medical decision based on, and justifying it like that has gone. In those situations where previously you probably would just do a form, we’re now not………………”

Consultant interview, MacCormick 2016 Decision making tools Emergency Healthcare Plans • Plan to deal with specific anticipated emergency/ urgent situation

What are What interventions/ What can What the warning When treatments should the EMERGENCY aspects signs for and who be given? patient/ could go the should HEALTHCARE carer do on Would an admission wrong? patient/ they call PLAN their own? for help? be considered? carer? When? Treatment Escalation Plans • Plan the care of patients likely to deteriorate even if the mechanism or timing is unpredictable • Cover a range of clinical decisions discussing which ones a patient could benefit from and wants • Popular with patients and staff- cover issues other than resuscitation, discussion can also cover treatments which may help • DNACPR forms to be shortly replaced by Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) • Will incorporate elements of escalation decisions and emergency planning AMBER Care Bundle

• Is the patient deteriorating, clinically unstable and with limited reversibility? Assessment • Is the patient at risk of dying in the next 1-2 months? Management Best practice • Prompts to develop: • medical plan Engagement • review plan • escalation plan Recovery uncertain • patient and family discussions about possible scenarios Communication about decision making Systematic reviews of communication around prognosis Hancock et al. 2007 Parker et al. 2007, Virdun et al. 2015 • Most health professionals believed patients and caregivers should be told the prognosis; in practice many avoided the discussion or withheld information • Patients reported that prognosis was not discussed unless they directly asked about it • Studies suggest it is possible to discuss prognosis without having a negative impact on the patient and that honesty about the clinical situation can be a means of giving hope • Patients and caregivers reported a need for more information at all stages on the disease process • Patients described effective communication as being given honest information to allow them to prepare for end-of-life, know what to expect and someone taking the time to listen to them • For families, effective communication meant that staff were available to provide information as needed along with straight forward and honest information about the patient’s condition, treatments and options for future care. • A patient’s need for information may change as their condition progresses, with a desire for less information while their relatives may want more Interviews with bereaved family members (90) of patients who had died in hospital Krawczyk and Gallagher (2016) • Lack of information about their possible prognosis, that the patient was ‘sick enough to die’ • Communication sometimes over-used euphemisms and the provision of false hope • Because many families had not understood that the patient was ‘sick enough to die’, some questioned whether wrongdoing had occurred when the patient had died seemingly ‘unexpectedly’ • Respondents reporting professionals communicating about prognostic uncertainty also reported effective communication, information-sharing and greater satisfaction with care • Clear communication was seen to enable the families to spend time with the patient at end-of-life I’ve never found myself going round “Relatives were arriving as it was saying, right, would you like an visiting time. Many came to the update, would you like an update? nursing station to ask about their You haven’t got time. Cos every family member, or to ask to speak single patient has got a visitor, so to to a doctor. I noticed that it was be able to go round. And it’s not often difficult for staff to find the just, if I could go to somebody and right person for them to speak to. say, this has happened, that’s All of the doctors were busy with happened, this is gonna happen patients or other relatives and tomorrow, and move onto the next often the nurses were too.” one. But it’s not. They’re twenty minute conversations that you have with relatives, and you cannot do that with everybody”.

Some barriers- time to communicate Field Notes/ Interview , MacCormick 2016 I asked the doctor if he thought I asked the doctor if he thought the Emily was dying. He replied that patient was dying. He said she was she was not yet dying, but was ‘fading away but not actively dying’ right on the edge

Some barriers- clear communication Field Notes/ Interviews , MacCormick 2016

“Because this came on him so very suddenly, and he was so very ill, and then the doctors told us to prepare for The doctor said there was a the worst. One of the doctors told me, small chance she would they could only do what they could do, improve but that it was most you know, and we’d need a little help likely that she would from him upstairs. And that just makes deteriorate and pass away. you think, right, if you’ve gotta pray, you know it’s real, real bad” Systematic reviews of information giving and decision-making (Gaston and Mitchell, 2005, Belanger et al. , 2010, Virdun et al, 2015) • Majority of patients want an active part in decision making but a significant minority do not • As patients became more unwell their desire to be involved tends to decline • For families, SDM meant feeling supported in decision-making, being given the opportunity to be involved in decisions and having a sense of control over the care of their loved one Collaborative decision making • Shared Decision Making is based on the ethical principle of respecting the autonomous decisions of patients and is closely related to the concepts of informed consent

and informed choice (Agledahl et al. , 2011). • ‘Clinical practice is better described as a process over time and space in which several participants guide the actions that are taken. Patients are not without influence in this process, since good clinical practice is adjusted to their needs, but opportunities for autonomous choice

are, in fact, quite limited ’ (Agledahl et al. , 2011). • Rather than active SDM at end-of-life, families found that end-of-life care ‘fell into place’ as patients deteriorated (Drought and Koening , 2002 ) Final Thoughts How can we improve end of life care?

• Look at new service models- eg. hospital palliative care wards • Support our teams- burnout is a major risk when end of life care is delivered poorly • Provide active management alongside “sick enough to die” conversations/ actions • Consider tools that facilitate active management with preparing for end of life- eg. AMBER, TEPs How can we improve end of life care? • Prioritise communication- eg. open visiting, family diaries • The relationship between staff and patients are as important as specific interventions- continuity of decision making and communication is difficult • Narrow the information/communication gap with patients and relatives • The decision making process and individual decisions become the focus when there is an understanding gap