Objectives The aim of this evaluation is to describe the components and results of urgent care planning in Coordinate My Care (CMC), a digital clinical service for patients with life-limiting illness, for use if a patient is unable to make or express choices. Ceiling of treatment (CoT) plans were created detailing where the patient would like to receive their care and how aggressive medical interventions should be.
Methods A retrospective service evaluation was completed of all CMC records created between December 2015 and September 2016 (n=6854). CMC records were divided into two cohorts: those with a CoT plan and those without. The factors associated with these cohorts were reviewed including age, diagnosis, resuscitation status and preferences for place of death (PPD). Analysis of the non-mandatory free text section was carried out.
Results Two-thirds of patients had recorded decisions about CoT. Regardless of which CoT option was chosen, for most patients, PPD was home or care home. Patients with a CoT plan were more likely to have a documented resuscitation status. Patients with a CoT were more likely to die in their PPD (82%vs71%, OR 1.79, p<0.0001). A higher proportion of patients with a CoT decision died outside hospital.
Conclusion This analysis demonstrates that a substantial proportion of patients are willing to engage in urgent care planning. Three facets of urgent care planning identified include PPD, CoT and resuscitation status.
- end of life care
- terminal care
- service evaluation
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Recommended summary plan for emergency care and treatment (ReSPECT) has been launched in the UK by the resuscitation council as a ‘process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices’.1 ReSPECT promotes a change from a process which focuses solely on whether or not cardiopulmonary resuscitation (CPR) should be carried out to one which couches this decisions within the overall goals of care of the individual patient.2 For many clinicians and patients, this will require associated training, resource and practical implications.
Coordinate My Care (CMC) is a London-wide clinical service which facilitates the creation of personalised urgent care plans for patients with a life-limiting illness. CMC facilitates the recording of individual patient clinical information, choices and recommendations for care. A CMC care plan includes details such as diagnosis, prognosis, resuscitation status and goals of care.3 CMC is unique in that it is a digital integrated care exchange which ensures that CMC records are live, up to date and shared with acute, primary and emergency healthcare providers, as well as hospices and care homes, in real time.3 4 The CMC urgent care plan provides healthcare providers with information and context to guide ongoing and future care services, while having the flexibility to respond to changes in the patients’ current condition and choices.
The CMC urgent care plan includes documentation about preferred place of care and death and whether CPR should be attempted. Since November 2015, each new patient who consents to a CMC urgent care plan is also invited to record an individual ceiling of treatment (CoT) plan. This captures patient and clinician decision-making about how aggressive medical intervention should be in case of emergency or clinical deterioration and details on where that medical care should be provided. In CMC, patients are given a discrete choice of options (detailed in table 1) ranging from full intensive care in an acute hospital with ventilation to comfort and symptom control at home.
Internationally, other forms of urgent care plans have been used and proved successful such as physician orders for life-sustaining treatment (POLST) in America used to guide treatment when patients are incapacitated. It was shown to impact care received and led to increased numbers dying out of hospital.5
In light of the current national debates about CPR decision-making,2 we present an evaluation of the CoT data from CMC.
The aims of this service evaluation were (1) to identify the numbers of patients willing to engage in urgent care planning, (2) the factors associated with and the numbers patients completing CoT plans and (3) to undertake a comparison of the outcomes of patients with and without CoT plans.
This retrospective service evaluation was approved by the Royal Marsden Hospital Committee for Clinical Research. All patients with a CMC care plan give informed consent to the secondary use of anonymised data for research purposes before creating a plan. This study was based on anonymised records and no ethical approval was required according to national guidelines. All patients with a CMC urgent care plan created between 1 December 2015 and 30 September 2016 were included.
Data were analysed using standard descriptive statistics. Two cohorts were initially compared: those with a CoT plan and those without, using Χ2 test. Further details of each of the five CoT categories are presented for illustrative purposes as the numbers are too small to justify comprehensive comparison. An initial analysis of outcomes of patients in terms of place of death was carried out. CMC users can complete a non-mandatory free text section in the CoT section if they wish. Qualitative thematic analysis was carried out on all free text comments from patient files between 1 December and 31 March (n=516).
The analysis included 6854 patients who had a CMC record created within 10 months. Two-thirds of patients had recorded decisions about CoT. A higher proportion of patients with a non-cancer diagnosis had a CoT plan. Of the patients who died and who had a documented PPD, patients with a CoT were more likely to die in their preferred place of death (82% vs 71%, p=0.0001, OR 1.79) (table 1). A higher proportion of patients with a CoT decision died outside hospital. Seventy-eight per cent of patients included in this analysis had a documented decision about resuscitation.
Patients with a CoT plan were more likely to have a resuscitation status decided on rather than a default for resuscitation. Regardless of which CoT option was chosen, for most patients, PPD was home or care home.
Of the patients who died and for whom place of death is known, 78% had a documented PPD.
On review of the 516 free text data comments within the CoT plan section, 14% of comments involved decisions regarding antibiotics. Other themes included medical therapies such as pleural and ascitic drains, oxygen, dialysis, transfusions and artificial feeding with 12.4% of patients commenting on specific wishes about one of these interventions. There was documentation that patients found anticipatory decision-making of this nature challenging and instead wanted a decision to be made at the time in 6.2% of CMC records. Only two patients had documentation that they were unable to engage with CoT decisions due to distress of such conversations.
In this cohort, a sizeable proportion of patients had documentation about CoT decisions. This demonstrates that discussions about patients’ choices and wishes at end of life are feasible and are accepted by patients/families and healthcare workers. This finding is in keeping with international data about urgent care planning such as POLST.6 This supports broadening the remit of discussions beyond CPR to involve interventions and boundaries of treatment.
The purpose of such decision-making is to make known patient wishes in the event of an emergency or other medical crisis, when the patient may no longer have capacity. If a patient has capacity, the CoT plan provides guidance to the urgent care service; however, the views of the patient must take precedence. Conversations regarding CoT and resuscitation status should happen together to create coherence and clarity in the decision-making. The options given when discussing CoT reduces some of the negative aspects of the do not attempt cardio-pulmonary resuscitation (DNACRP) process for patients and relatives, as positive treatment actions can be decided on as well as ruling out those that may be inappropriate.7 This in turn can facilitate such discussions that clinicians often find difficult.8 9 Although the DNACRP decision is compatible with continued active care, there is some evidence that suggests that the DNACRP leads to a generalised less intensive care.7 10 By combining both resuscitation and other CoT aspects in the conversation the patient can be clear on the treatment they will and will not receive as a consequence of the decision.
PPD remains a marker of quality end-of-life care.11 In this cohort, regardless of whether a CoT plan was made and regardless of the details of the CoT plan, most people wanted to die either at home or in a care home. This included patients who wanted full active medical management including hospitalisation and CPR. This apparent incongruence may reflect a difference in perceptions about preferences for place of care versus place of death. It may be that some patients want all possible treatment until a point when no further benefit can be made. At this point, aim of care would shift from solely survival to ceasing active treatment and focus on symptomatic treatment and fulfilling wishes they have for end of life and dying in their PPD. This point may be close to end of life and ability for the person to die in their ideal place of death may be limited due to factors such as care needs and service provision. Open realistic discussions and documentation should happen in advance to ensure best possible chances of fulfilling wishes. It is important to ensure that patients and relatives have realistic expectations and understanding of the benefits and limitations of various medical interventions, including how place of care can limit these options. Once discussed, an informed decision can be made on an appropriate CoT which therefore may help to facilitate dying in their PPD.
There are three key areas which should be included in discussions about urgent care planning for patients at end of life:
CoT: where would the patient should be cared for and how aggressive should any medical intervention be;
In circumstances when there may be incongruence as found in our analysis, it would be impossible for urgent care providers determine which takes priority. Therefore, we suggest that discussions about these three aspects should be held in tandem to ensure that decisions and documentation are clear and unambiguous. The CMC platform has been update to facilitate this.
The aim of documentation about patient preferences and clinical recommendations about an individual patient’s clinical care is to provide information which may guide care in the event of an emergency in which the patient is unable to express choices. Our evaluation shows that many patients are willing to engage in such comprehensive discussions. These discussions form the basis of urgent care planning. Many patients with advanced disease have complex needs and are cared for by multiple healthcare services involving many healthcare professionals.3 For urgent care planning to be truly meaningful and effective, there must be comprehensive plans in place and available to all healthcare providers. Our analysis demonstrates that expansion of urgent care planning to include not only resuscitation decisions but also CoT plans is feasible and clinically useful.
Our study highlights the need for future research on the impact of CoT documentation on patient outcomes and family/clinical decision-making when patients no longer have capacity. Qualitative analysis of the reasons why patients/clinicians do/do not engage in PPD or CoT decisions and the emotional factors associated with urgent care planning would enrich our understanding of the applicability of urgent care planning for patients in general.
Contributors HB undertook the service evaluation, data analysis and writing report. JD , JR designed the service evaluation. JD, JR and TC assisted in the writing of the article. AS was involved in the data gathering and technical help.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent Detail has been removed from this case description/these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.
Ethics approval Research and Development Team Royal Marsden Hospital.
Provenance and peer review Not commissioned; externally peer reviewed.
Correction notice This article has been corrected since it published Online First. The title has been corrected.
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