Amyotrophic Lateral Sclerosis (ALS) Patient Care Preferences

Measure Specification

Since it was released in 2013, the quality measure has been adopted by the Centers for Medicare & Medicaid Services in their Quality Payment Program. The measure has not been identified as topped-out. The measure was also implemented in the American Academy of Neurology Institute’s (AANI) Axon Registry®, and review of average performance scores indicated a continued gap in care: the 2018 average performance, excluding zero denominator from 8 clinicians, was 53.

59%; the 2019 average performance, excluding zero denominator from 149 clinicians, was 48.8%; and the 2020 average performance, excluding zero denominator from 105 clinicians, was 73.92%. Evidence supports there is a continued gap to address for inpatient and outpatient clinicians.1-5 Clinical practice guidelines continue to stress the importance of end of life planning for patients with ALS and their care partners, but guidelines for discussions about end-of-life care for patients with ALS have not been published.

1,6,7 In 2022, the AANI released a position statement, Clinical Guidance in Neuropalliative Care, that encourages clinicians to engage in neuropalliative planning at an early stage, given the poor prognosis and likelihood of difficulty expressing a desire to shift the focus of care as the disease progresses.

• Be prepared to discuss end of life issues whenever people wish to do so. • Provide support and advice on advance care planning for end of life. Topics to discuss may include: o What could happen at the end of life, for example, how death may occur o Providing anticipatory medicines in the home o Advance care planning, including Advance Decisions to Refuse Treatment (ADRT) and Do Not Attempt Resuscitation (DNACPR) orders, and Lasting Power of Attorney o How to ensure advance care plans will be available when needed, for example, including the information on the person’s Summary Care Record.

o When to involve specialist palliative care. o Areas that people might wish to plan for, such as: • What they want to happen (for example, their preferred place of death) • What they do not want to happen (for example, being admitted to hospital) • Who will represent their decisions, if necessary • What should happen if they develop an intercurrent illness.

• Think about discussing advance care planning with people at an earlier opportunity if you expect their communication ability, cognitive status or mental capacity to get worse. • Offer people the opportunity to talk about, and review any existing ADRT, DNACPR orders and Lasting Power of Attorney when interventions such as gastrostomy and non-invasive ventilation are planned.

• Provide additional support as the end of life approaches, for example, additional social or nursing care to enable informal carers and family to reduce their carer responsibilities and spend time with the person with MND [motor neuron disease]. • Towards the end of life ensure there is prompt access to the following, if not already provided: o A method of communication that meets the person’s needs, such as an AAC system.

o Specialist palliative care. o Equipment, if needed, such as syringe drivers, suction machines, riser-recliner chair, hospital bed, commode and hoist. o Anticipatory medicines, including opioids and benzodiazepines to treat breathlessness, and antimuscarinic medicines to treat problematic saliva and respiratory secretions.

This measure contains one strata defined by a single submission criteria. This measure produces a single performance rate. For the purposes of MIPS implementation, this patient-process measure is submitted a minimum of once per patient during the performance period. The most advantageous quality data code will be used if the measure is submitted more than once.