Only 5 per cent of the British public have considered how they would like to be cared for at the end of their lives but lessons from the US show a way forward, says Drew Weil

Surprisingly, nearly 70 per cent of the British public say they’re comfortable talking about death.

Less surprising, however, is that the same report by Public Health England in 2013 found that only 5 per cent have actually considered how they’d want to be cared for at the end of life.

This is a disconnect of immense proportions.

Advance care planning

The data suggests a shortcoming of successful advance care planning (ACP) among the British public.

ACP is defined as the process of coming to understand, reflect, discuss and plan for a time when you cannot make your own medical decisions. A person who engages in successful ACP will be more likely to define the type of care that they would or would not like to receive.

Every adult should engage in some sort of ACP with family members and loved ones

They will be able to detail what they consider to be the right care in the right place at the right time.

ACP serves as the vehicle to deliver holistic care. It finds itself in harmony with the Five Year Forward View and supports the repeated calls for engaged relationships between clinicians, caregivers and their patients.

There is no correct or incorrect outcome from ACP – it is a person-centred conversation. This is always a victory.

It can result in more or less thorough plans and every adult should engage in some sort of ACP with family members and loved ones.

From the patient’s perspective, ACP can be reduced to five major steps:

1. Reflect

2. Identify a patient advocate

3. Determine preferences of care

4. Document your wishes in an advance statement

5. Communicate your plan.

ACP is still somewhat of a nebulous topic. It is more difficult to discretely define when it occurs. Additionally, it requires inherently different responsibilities from both the patient completing it and the local health economy caring for the person.

Personal reflection and introspection are necessary hallmarks of ACP and are universally constructive patient exercises. Irrespective of location or time, ACP helps reveal what is truly important to a person – whether it be anxiety, passion or personal goals – and aligns treatment options that are relevant to that.

ACP should be considered a standard in proactive healthcare. But as statistics show, it is not a widely adopted process. By bolstering its uptake, ACP can influence local health economies to improve patient outcomes and also find cost efficacy.

Successful models

Evidence shows that programmes with robust ACP components that guide patient care find significant cost savings.

The Aetna Compassionate Care Model from the US found cost savings of nearly £7,600 per engaged patient per year (engaged patients are identified as Medicare Advantage beneficiaries in the last year of life choosing to partake in services). This model found an 82 per cent reduction in acute inpatient days, 77 per cent reduction in emergency room visits, 86 per cent reduction in intensive care unit visits, and 82 per cent of engaged patients elected to choose hospice for end of life plans.

Other models, like the Sutter Health Advanced Illness Management (AIM) programme in Northern California, match ACP with comprehensive in-home services. This model has been able to reduce patient costs by approximately £3,200, hospitalisations by 60 per cent, and a 75 per cent reduction in ICU days per patient after 90 days of enrolment.

Both these models focus explicitly on people with advanced illness and at the end of life (both models are for people in the last 12-18 months of life). Thus, this may more directly impact the total cost savings, utilisation reductions, and hospital admissions.

Programmes with robust ACP components that guide patient care find significant cost savings

Other models have aimed to catalyse community engagement, for example the St John Providence Health System in Detroit, Michigan; create extensive ACP microsystems such as the Gunderson Lutheran Health System in La Crosse, Wisconsin; and develop systemic approaches to normalise ACP like the Sharp Healthcare in San Diego, California. These will have more diffused returns on investments, but still focus on engaging people in ACP.

Research has also been done in the US to consider the implementation of Shared Decision Making (SDM) tools. The research projected that by uniformly implementing SDM for just 11 procedures, it could lead to $9bn (approximately £5.8bn) cost savings in one decade.

Although SDM is not directly synonymous with ACP (it is more of a tool that can be used during the process) and the scale of this estimate is quite large, it helps illustrate a critical proof of concept: by making people actively engaged about the healthcare they are receiving, ACP leads to more appropriate and desired treatments that are ultimately less costly.

The NHS has a small library of SDM tools, which may be helpful for immediate implementation.

Where to begin?

ACP spreads best within a community when the people working within the health system and on the frontlines are the ones to lead the charge. It is undeniably a topic best led by example.

This is what the American-based Institute for Healthcare Improvement advocates in their Conversation Ready organisational-model.

This will undoubtedly necessitate resource-provision (eg educational series, engagement campaigns, realigning incentive structures, etc).

ACP spreads best when the people working within the health system and on the frontlines are the ones to lead the charge

However, organisations that employ this sort of employee-first approach will surely begin to bridge the disconnect and facilitate people completing ACP.

This makes ACP a standard for people’s routine care.

To perpetuate this success and concomitantly inspire community members to engage in ACP, an organisation may also consider:

  • Mining data regarding Advance Statement completion and ACP perceptions (from medical providers and patients);
  • Engaging in models that pilot ACP intervention tactics;
  • Developing electronic storage and retrieval systems that link Advance Care Plans amongst medical providers; and
  • Providing consistent and useful messaging regarding ACP.

These ACP conversations are not easy to have – if they were, they would be had by more than 5 per cent of the public. However, the local health economy has a responsibility to abet their occurrence and encourage their role in holistic care. l

Drew Weil is an MPH student in healthcare management at Yale University and intern with East and North Hertfordshire Trust.