Practical Approach to End of Life Decision Making Needed

Liam Davenport

October 25, 2021

The "blanket" use of do not attempt cardiopulmonary resuscitation (DNACPR) during the COVID-19 pandemic has thrown issues around end of life (EOL) decision making into stark relief and highlighted the need for a more consistent approach, argues an expert.

Dr Ben Thomas, a consultant nephrologist at Betsi Cadwaladr University Health Board, Wrexham, said the pandemic exposed the "vulnerability of our frail elderly and comorbid population", as well as "the fallibility of modern medicine in terms of capability and capacity".

He told the Royal College of Physicians' (RCP) Med+ 2021 conference, on 25 October, that DNACPR notices were completed correctly and in full in only 52% of cases during the pandemic.

Indeed, the Care Quality Commission's 2021 report Protect, respect, connect – decisions about living and dying well during COVID-19 highlighted that sufficient information to complete the form was available in only 42% of cases, while an assessment of the patient's best interests was recorded in only 32%.

There is therefore a need for a "practical framework" for EOL decision making, focusing on the 5Cs of context, capacity, consultation, clear documentation, and communication, he argued.

'Medicalised Death'

Dr Thomas said that death has become "medicalised", with almost half (45.6%) of people aged 75 years and older in England who died in 2017 doing so in hospital, while 29.8% died in a care home and 19.7% at home.

Consequently, there need to be conversations around "withholding and withdrawing" life-sustaining treatments, and yet the timing of these conversations can affect the "range of treatments discussed".

"Paradoxically, we often start at the end," Dr Thomas said, "with a discussion about DNACPR."

This so-called treatment ceiling, in which a treatment is withheld under certain circumstances, is not necessarily the most "controversial", however. Others include intensive care unit admission, the use of non-invasive ventilation or intravenous antibiotics, parenteral feeding, and even hospital admission itself.

The COVID-19 pandemic has "put a spotlight" on EOL decision making around these treatment ceilings, Dr Thomas continued, by highlighting the "need for timely and appropriate consideration of ceilings of treatment beyond DNACPR".

However, the "legal framework" around these decisions has not changed, despite the pandemic presenting "practical challenges" in making and applying them.

That framework is founded on an approach to life-sustaining treatment in which the sanctity of life is "not absolute" and notions such as treatment "futility" and an individual's prospect of recovery are recognised.

Moreover, it emphasises the requirement for patient consent and the primacy of advance refusal of treatment notices, as well as the need for treatment to be "in the best interests of the patient".

Dr Thomas underlined that there is a difference between the legal and medical approaches to life-sustaining treatment, with the former concentrating on the lawfulness of starting or continuing a treatment and the latter placing the immediate problem "in the context of the patient's overall condition" in terms of withdrawing or withholding a specified treatment(s).

Legal Cases

Recent legal cases have established that, in practical terms, a DNACPR decision should include a "presumption in favour of patient involvement", and it is the clinician's duty to consult with them, unless to do so is "likely" to cause harm.

Taking the decision in the best interests of the patient means that it should be patient-centred and follow the principles of individual autonomy, looking at the patient in question and not the generic 'reasonable' patient.

Dr Thomas argued that the Mental Capacity Act (MCA) 2005 does not offer a workable framework for approaching this, as it assumes that "all relevant clinical information is available at the point of care", and that patient representatives are "accessible and available".

It also considers the individual case in isolation, rather than incorporating the wider context, and assumes that disagreements "can be easily and swiftly resolved".

He continued that individualised treatment plans, which follow the MCA framework, facilitate the consideration of "all relevant ceilings", but underline the need for detailed medical records to support the plan.

In 2017, Fritz et al devised the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT), which was designed "to replace DNACPR forms" in a two-page format.

Moreover, the intention was "to provide additional support for conversations about goals of care and…guidance to clinicians about which treatments would or would not be wanted in an emergency, in the event of a patient not having capacity to make decisions for themselves".

Dr Thomas said that this is also limited, in that it is "only as good as the person filling in the form," and lends itself towards the use of "unqualified" terms such as 'frailty' and 'dementia'.

There are also geographical variations in format and there is often a lack of supporting documentation, as documents are often held by the patient and "may not be reliably available at the point of care".

For Dr Thomas, the answer is the 5Cs, in which the context asks whether the patient is likely to benefit from a treatment, and whether any decisions have been affected by the prioritisation of resources, and the capacity determines the patient's ability to be involved in decision-making.

The 5Cs also mandate that the detail and outcome of patient discussions be recorded, and that the reasons why appropriate consultation may not be possible be "clearly documented".

This should all be provided as part of a "clear" record, and all decisions should be effectively communicated, including giving the patient or their representative a copy.

No funding declared.

No relevant financial relationships declared.

Med+ 2021: Abstract Beyond DNACPR: a framework for decision making at the end of life. Presented 25 October.

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