End of Life Care in Frailty: Urgent care needs
Although urgent care focuses upon restoring those with acute ill-health back to their functional baseline, for older people with frailty, this is not always possible. Patients admitted with a Clinical Frailty Score of 7-9 have an inpatient mortality rate of 11-31%, readmission rates of 10-14% and a one-year mortality rate of 50%.1,2
For many frail, older people who become unwell, the magnitude and course of recovery is uncertain, and may unfortunately end in death. In addition, ‘progressive dwindling’ may result in an increase in the care support required. Both situations can result in presentation to acute services as a crisis, and hospital admission in itself may result in iatrogenic harm, and should therefore not be perceived as ‘low risk’.
Due to the high risk of dying in both of these presentations, it is imperative that there is a clear and unambiguous patient-centred treatment plan, recognising the potential for death and deteriorating function.
Recognising uncertainty
Tools such as the AMBER (Assessment, Management, Best Practice, Engagement, Recovery Uncertain)3 care bundle may be useful in helping healthcare professionals recognise and communicate illness trajectories and uncertain recovery. There is little evidence for the use of AMBER specifically in frail older patients, but it may be a useful prompt to consider clinical deterioration, goals of care and potential for reversibility in acute settings.
The Supportive and Palliative Care Indicators Tool (SPICT™)4 is used to identify people with deteriorating health who are at risk of dying in the next 12 months. The SPICT-4ALL tool is written using minimal medical terminology, allowing laypeople such as care home staff to highlight people with declining health and trigger a holistic assessment and advance care planning conversation. The SPICT may be a useful tool to highlight declining health and facilitate consistent communication between healthcare professionals, patients and those important to them.
Discussing uncertainty in the context of acute deterioration
Discussing uncertainty of recovery may be challenging for patients, loved ones and clinicians, and the use of clear, unambiguous language is imperative.
The following guidance and examples of useful phrases may be helpful, and may be adapted for use in other circumstances.
|
Communication Scenario |
Useful phrases |
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Explain recovery is not certain and that there is a risk of dying |
“You are very unwell, and some people who are as unwell as you can deteriorate and die. Could we talk about what would be important to you if that happened?” |
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Explain the considerations when balancing benefits and burdens of treatment |
“Hospital admission would allow us to treat a severe infection with antibiotics through a vein, but some people would rather go home with tablet antibiotics, even if there is a risk that things could get worse, because being at home is the most important thing to them.” |
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Balancing hope with realistic expectations and a palliative approach |
“I think you’re very unwell. I hope that these treatments might make you better, but there is a chance that things could still get worse, and I think we should be prepared for that. I wish there were other things that we could do to make you well again, but even if we can’t there are other things we can do to manage any symptoms and make you feel comfortable.” |
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Discussing parallel planning for recovery and deterioration |
“Even if we give some treatments that might help, things might get worse anyway. If X deteriorates tomorrow, what might we wish we had done today?” |
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Discussing patient hopes and wishes for the end of their life |
“While you are well enough to talk about it, I think we should think about planning ahead for if things got worse. Can we talk about what things are important to you if you became more unwell and weren’t able to tell us?” |
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Discussing when a treatment (for example CPR or further chemotherapy) is not beneficial |
(Using CPR as an example): “In some circumstances, when a person’s heart stops, we use electricity and pushing on the chest to try to restart the heart. This is only successful when the heart and the rest of the body is healthy. If your heart stopped beating, it is likely to be because of your illness and would mean that it would be very unlikely to be successful. In that situation, I think we should allow a natural and dignified death.” |
Planning for deterioration
Recent work highlights a risk of significant functional decline associated with CPR in the over-80s with associated negative reflections for the patient and those important to them.5 Honesty about realities of treatment and potential outcomes may help clinicians and patients to make pragmatic decisions based on priorities and values. Figure 2 shows example situations where a shared, pragmatic decision could be explored by healthcare professionals in partnership with patients and/or family.
Remember, planning for the end of life does not mean that the patient will die during that admission, or that treatment of reversible causes of deterioration should not be undertaken. In fact, even while using a palliative approach focussed on symptom management, treatment of a potentially reversible cause of deterioration might be entirely appropriate, which might include surgery (e.g. hip fracture repair, defunctioning ileostomy for bowel obstruction) or other major interventions. Importantly, clinicians can use frailty scores (e.g. identifying a 90-year-old who is robust or only mildly frail) to advocate for appropriate, restorative treatment.
Figure 2: Examples of alternative response to urgent medical need
| Scenario |
Ambulance crew assessing frail older patient in a care home with a head injury on anticoagulation |
GP assessing frail older patient with recurrent aspiration pneumonia secondary to stroke |
Emergency Department Clinician assessing a frail older patient with Type 2 Respiratory Failure secondary to end stage COPD |
| Typical response |
"This patient is high risk for a bleed - we must go to A&E" |
"This patient has sepsis - call 999" | "This patient is in Type 2 Respiratory Failure - start non-invasive ventilation (NIV)" |
| Alternative response |
"This person is anticoagulated and has a head injury but hospital makes them distressed and they are unlikely to benefit from an operation. Shall we review the anticoagulation and keep an eye on him here?" |
"This person has had lots of admissions and doesn't like being in hospital and wouldn't want artificial feeding. This is a sign that she is deteriorating - will a hospital admission allow for added comfort that I cannot institute in current care facility?" |
"This person has a life limiting condition and he is at risk of dying whether we start NIV or not. Is there time to have a discussion about our goals of treatment and what our priorities should be?" |
Seizing opportunities while a patient is well to plan ahead for the end of life may reduce the need for rushed, unscheduled conversations at a time of crisis. The majority of older people are receptive to a discussion,6 and goals of care conversations should ideally be woven sensitively into all clinical interactions with patients in order to foster a culture of openness and honesty around discussion of death and dying. For this reason, all healthcare professionals involved in the care of frail older people should have role-specific training on goals of care conversations. For example, care home staff may benefit from training and implementation of tools such as the SPICT-4ALL in order to prompt a clinician to initiate a pragmatic integrated care plan, while paramedic teams may benefit from advanced communication skills training and telephone support from specialist teams.
Where there has been a significant decline or improvement in the person’s health or function, this should prompt a review of their goals of care, to ensure that plans adequately reflect patient priorities and potential outcomes.
Goals of care conversations
| Content | Context |
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Tools such as the Rapid Discharge guidance (see Resources below) can facilitate early discharge home if the patient wishes and circumstances allow. Plans for emergency treatment and end of life should be documented using standardised documentation such as a treatment escalation plan, ReSPECT form or other emergency care planning tool. Regardless of the document used, it should be readily available to healthcare personnel, both in hospital and the community.
Any decisions made in hospital should be effectively communicated to any healthcare professionals involved in the patient’s care, including community services. For patients who will be discharged from the hospital to community setting, ensure that the patient’s priorities and goals have been clearly communicated, as well as changes to medications and the provision of anticipatory medications. If patients are in the last days of life, updating community teams should preferably be done via telephone.
Emergency admissions to hospital during the last year of life are common and this often reflects changing symptomatology and the impact of psychosocial factors, and these should be explored on each patient encounter. A readmission in similar circumstances is likely to be an indication that some aspect of the person’s symptomatic, psychological or social needs should be revisited, or perhaps of carer strain. Dyingmatters.org is a useful resource for both patients and their loved ones to plan for the end of life.
Organisations should consider collaborative work across inpatient and community teams on recognition and management of uncertain prognosis, and use patient experiences to design a patient journey towards the end of life that is individualised and obstacle-free.
References
- Wallis SJ, Wall J, Biram RWS, Romero-Ortuno R. Association of the clinical frailty scale with hospital outcomes. QJM: An International Journal of Medicine 2015;108(12):943-949.
- LeicGEM. Frailty Outcomes (Unpublished Work). 2019.
- Guy's and St Thomas' NHS Foundation Trust. The AMBER Care Bundle. Available at: www.ambercarebundle.org/homepage.aspx.
- The University of Edinburgh. The Supportive and Palliative Care Indicators Tool (SPICT™). Available at: www.spict.org.uk.
- Burden E, Pollock L, Paget C. Quality of life after in-hospital cardiopulmonary resuscitation for patients over the age of 80 years. Postgraduate Medical Journal 2019 Sep 13,:postgradmed-136565.
- Sharp T, Moran E, Kuhn I, Barclay S. Do the elderly have a voice? Advance care planning discussions with frail and older individuals: a systematic literature review and narrative synthesis. Br J Gen Pract 2013;63(615):e65-e668.